This month for the Sava Wellness Community interview series we talk with Tori (she/her) from USA. Tori speaks about her experience with a rare disease, HsAN. When this interview was posted, it was February which is Rare Disease Month to bring awareness to rare disease, which according to the World Health Organization is a disease that affects fewer than 65 in 100,000 people. To help with this month you can advocate for people with rare disease to have a voice and their story heard, but you can also donate for research to be done. You will read below that Tori helps advocate with the HsAN Foundation, and at the end of the article you can visit the website to learn more about how to be a rare disease ally. Additionally, you can follow @chronicloveclub on Instagram as they posted the entire month about Rare Disease Month and different rare diseases.

Hello Tori! It is great to talk with you today. Could you please tell us a little about yourself?

I live in Minnesota, USA. I like to do puzzles and listen to Elvis Presley and Jeremy Camp. My mom has been really excellent in caregiving and assisting in my healthcare. I spread awareness about ostomies and my condition, I’m a guest speaker at my former high school to juniors and seniors in a CNA class, and I’ve been working with HsAN foundation to promote the foundation. The HsAN Foundation was founded to spread awareness and fund gene therapy research for those affected and find a cure/treatment for HsAN. There are only 300 people worldwide living with HsAN.

Do you have a diagnosis for your symptoms? If you have a diagnosis, can you tell us what it is and describe what that means for you? 

I have HsAN and that means I need to watch out for injuries as I don’t feel pain, I need to be in a temperature controlled environment 24/7, I have to keep an eye on the weather, and more. HsAN stands for Hereditary Sensory and Autonomic Neuropathy aka Congenital Insensitivity to Pain with Anhidrosis. I can’t feel pain or temperature, can’t sweat, have hydration issues, can’t regulate my body temperature and more due to HsAN. It’s usually caused by the NTRK1 gene mutation but some don’t have a known gene and mine was caused in utero. I do have a genetic mutation of uncertain significance/SPG11 and it causes autism, intellectual disability, and peripheral neuropathy. I need to be in a temperature controlled environment because I can’t sweat and I overheat easily. When it’s cold my skin gets pale and blue-like and it’s hard to warm up. When it’s hot my skin gets flushed, I get tired, pass out, itchy, and more. I don’t do well with heaters either as they can make me overheat too, so I have to have the heaters on low. I have the temp on 71ºF during the day and 66ºF at night. 

Does having a diagnosis help you? 

Yes it does.

How long did it take for you to get a diagnosis? 

19 years.

When did you first realize that you had chronic illness and how has your journey been since then? 

When I was younger I knew I could never feel pain and I never have been able to sweat either or feel temperature. My journey has been uphill and downhill since then as I had a 6 year health decline when I turned 18. I have needed to get 3 medical devices to help me live and function; an ileostomy, urostomy, and an implanted port. My autonomic issues have worsened since age 18 (bladder and bowel issues worsened, hydration worsened, overheating, malnutrition, slow transit constipation, borderline gastroparesis, pelvic floor dysfunction, prone to a lot of injuries and infections, and more). My overheating issues worsened around age 16. 

How has your experiences of the world changed since your symptoms started? 

I have never known any other kind of life. My medical challenges have brought me closer to God. I can now advocate for others with ostomies and HsAN. I get different opportunities now. I’m a double ostomate as a result of complications of my HsAN. I had a neurogenic bladder, small bladder capacity of 100mL, urinary incontinence without sensory awareness (have never felt when I needed to go to the bathroom, never toilet trained and always went on a timed schedule), slow transit constipation, borderline gastroparesis, and pelvic floor dysfunction. 

Which of your symptoms do you find the most debilitating and why? 

Not being able to feel pain and not being able to sweat because I always need to be on the lookout for injuries, be extra careful, never know what’s wrong, and I always have to keep an eye on the temperature as I don’t feel it and I can’t regulate my body temperature either. Not being able to sweat causes difficulties because I can’t cool myself off naturally so I use a neck fan and an ice vest when needed. I stay in a temperature controlled environment 24/7 which helps to regulate my body temperature. Since I don’t sweat I can’t regulate my body temperature. I have sweat glands but they don’t function and I got the lowest percent on the Mayo Clinic thermoregulatory sweat test that they’d ever seen.

Can you describe what a bad day symptom-wise looks like to you? 

Overheating, not getting my fluids after a certain amount of time which for me means I can’t walk or talk, very sleepy, not aware or present, an infection, a bad injury that was discovered too late and more. This is due to my HsAN and is a treatment to manage it. I can’t walk or talk when I don’t get IV hydration because I dehydrate very easily and my symptoms are head pressure, trouble walking, trouble talking, slow moving, not aware or present, tachycardia and wonky vitals.

When you have a good symptom day, what do you like to do? 

Puzzles, watch Netflix, devotional, color, read the bible.

What has been the most helpful for you as you have gone through this journey? 

My faith (I wouldn’t be where I am today without God), my church family who has prayed for me and rejoiced with me, and my wonderful support system.

Thank you Tori! Tori is an advocate for her chronic illnesses on her Instagram page @toris.medical.journey Tori also advocates for the HsAN Foundation, you can visit their website at https://hsaniv.org

Tori’s condition is a great example of how quickly and drastically people’s situations can change when they have chronic illness. In the last month Tori’s condition has got worse. HsAN causes Tori’s immune system to be compromised and it is a degenerative condition. She has three highly resistant central line infections in her port. Her health team has changed her medical plan many times, and her hopes of moving out cannot happen at this time because her medical issues are a full-time job. Tori is trying to do her best with the continuously changing situation.

This instalment of the Sava Wellness Community Interview Series takes a bit of a different form than the previous iterations. In this article the owner of Sava Wellness, Sarah, talks with her good friend Dania! Being friends for many years, the two of them talked long on a video call and were able to get to the core of matters quickly and in some ways more deeply because they know each other so well. There was enough content for many articles, but the heart of their conversation is transcribed below. Please read on to learn more about Dania, her experiences with health care, her scoliosis, colitis, and hip replacement surgery.

Hi, Dania. It’s great talking with you today! Can you tell us a little bit about yourself?

Hi, I’m Dania. I live in Calgary, Alberta right now. I’m a PhD candidate, so I don’t have time for hobbies. But I read and I write a lot. I have a big family, so I spend a lot of time with them. I have a beautiful little bunny named Arlo. He’s the best.

If you have a job outside of your chronic illness and you want to share, can you please share about it. But we all know that having chronic illness or disabilities can be a full-time job in itself.

I’m an instructor. I teach asynchronously which means I teach online and the classes happen asynchronously where I post things and the students do them as they want. I teach three of those at Red Deer Polytechnic and I am a Teaching Assistant at the University of Calgary. I teach literature.

Okay, so let’s talk more now about actually chronic illness and disabilities. So, Dania, do you have a diagnosis for your symptoms?

I have a diagnosis for colitis. It took a thousand years and disagreeing doctors. I still don’t have a real treatment plan. It’s been messy.

You still don’t have a treatment plan?

Oh, I had a treatment plan and it was working but then the side effects were outweighing the benefit. I have a microscopic colitis so it’s not as easy to treat. So I think a lot of specialists, especially now when the health care system is in shambles, only treat higher risk patients who have a risk for cancer and not for all their symptoms. Lower risk patients kind of get pushed out of the specialists because there’s just no access to specialists because of the lack of them. So you end up with your family doctor who tries and puts you on something to kind of manage your symptoms. Specialists are no longer interested in lower risk patients because they just don’t have the time or resources to deal with you until you get more serious. So instead of being preventative care it becomes ‘once you’re at your last resort’ type care which is not ideal. This is what I’m finding in GI specialists and other places too. I also have scoliosis and I was having a lot of back problems. And when I went to see a specialist, which there aren’t many for adults, they said there are worsening symptoms, but I don’t want to see you until you can no longer walk. I ended up leaving that appointment and crying in my car because they were just so mean to me and there was a x-ray with my curved back on in the appointment and they tried to gaslight me into thinking I didn’t have scoliosis, like I was wasting their time. They did say “I guess if you’re having pain, I can send you to a different specialist” and ended up sending me to the hip specialist. Who was thankfully a really nice person and was like “okay, the pain in your back is from the scoliosis you shouldn’t have been pushed aside like that” and found that I also had a hip problem that was contributing to it. So I ended up getting my hip surgery but that’s kind of been my experience with healthcare. It’s just been really difficult. And I’m really lucky because I have a family doctor that cares a lot. You go in to healthcare with a concern about something that isn’t normal, especially women’s issues, and they make you feel like you are wasting their time, even when you know it isn’t normal, like never having a period. It makes you not want to go to appointments because they will just gaslight you.

I think more people need to say that because we all deal with it and we just think it happens only to us.

I worry if I push back I won’t receive any help so you just kind of sit there and deal with it. It’s horrid, right? There’s the power dynamic too of this person is a medical professional, a doctor, and you’re just at their power. They’re the ones that have all the power in any kind of helping you feel healthy situation and you just kind of sit there and you’re like “they must be right” because you know they’re the doctors. It actually was my mom that started pushing back for me to realize, hey, I don’t have to take this doctor’s rudeness and unhelpfulness. My sister is like, just go back and tell them what they need to know, and so I started like going to doctor’s appointments with a sibling.

I think it’s easier to have someone with you, and I’ve spoken about this before, I go to appointments with my Mom and it’s not because I’m a child, it is so that I have an advocate for myself and that if I do forget something she can help me.

It’s easier to stand up to someone when you’re not one-on-one and there’s not the power imbalance. It kind of feels like when there’s two of you, the power balance is almost balanced, right? Because it’s one doctor and two of you. The doctor can’t talk it down to you the same way when I have a person there to witness or stand testimony or something like that. It’s an advocacy thing and you feel safer going in with another person too, especially if you have this kind of experience of being gaslit.

So could you explain what colitis is and what scoliosis is for us?

So, colitis. This is similar to Crohn’s disease where you have an inflamed colon and it can cause ulcers and increases your risk of cancer as well. It often gets misdiagnosed or like shoved aside as IBS because the difference can only be told by doing a scope of the colon, which doctors don’t want to do now because it is too expensive. Symptoms are actually quite wide-ranging. They could be: diarrhea, constipation, blood in the stools, nausea, or night sweats. Fatigue is a big one that is difficult to deal with especially because you’re not absorbing nutrients the same. Bloody stools is the big one that will cause the doctors to do something. But there’s a lot of really uncomfortable symptoms that they’re just like, oh, it’s IBS, there’s no treatment. And so you’re like, no human is normally living like this; sometimes it is really embarrassing, but like excessive diarrhea which is not a normal adult human thing to deal with. A person in their twenties should not have to think about where all the bathrooms are in case of emergency. It’s stressful.

And does it kind of feel then like you’re trapped? Because you’re not sick enough, but you’re still dealing, and may I say suffering, with these symptoms?

Yeah, it’s exactly that. And then every time I develop a new symptom my family doctor, I’m really lucky and I know that a lot of people don’t have this, really advocates for me a lot. But, you know, it’s tough because you really feel like you’re not sick enough. But you’re still having all of these hideous symptoms and I don’t get any care because they aren’t bad enough and it feels like I just have to convince myself that I am probably fine. If you’re having a really tough day and you feel like dying, I think “I’m not that sick technically” so I can go to work, and then go and feel awful the whole time.

Would you call yourself chronically ill or disabled or something else?

No, because the system doesn’t really allow for me to have that kind of understanding, I guess just by a difference of label.

It’s interesting how much difference a label can change how you’re treated.

Yeah, and then it changes how you see yourself too. So if I’m having trouble being awake, sometimes when you get fatigued and it’s difficult to just open your eyes and then all your limbs are really heavy, and I tell myself “I’m so lazy” that there’s just like this voice in my head if I have to take a nap that I’m so lazy, you should be doing something, etc. So I think that the way that you’re labeled or the way that you’re diagnosed really changes you mentally, it allows you to give yourself a break if you have that diagnosis, but I have such a hard time doing that because I’m like, “oh, they say you’re fine.”

I think that is an even worse form of gaslighting because now they’re making you question your wellbeing and, I don’t want to say identity because I know we don’t all identify as our illness, but it kind of changes the way you think of how you function with your illness every day.

Yeah, totally. 

Okay, would you mind now talking a little bit about scoliosis?

Oh yeah, so there is curvature in my spine, my spine didn’t grow straight and it’s usually something that comes up during your growth spurt. It’s actually funny, I was in Lebanon when I was like fifteen and I was wearing a bathing suit, and my mom was like, what is going on with your hips? The way scoliosis looks, is that one hip is bigger than the other. So when we got back to Canada, my doctor said that’s scoliosis and sent me to a specialist. There’s different severities, I’m in the middle—meaning it’s noticeable, but it’s not hugely dangerous. It causes pain. And it’ll cause pain while aging. There’s really no treatment for people that don’t have severe cases. Severe cases can get surgery and physio.

Now, because I know you well, how does your hip and hip surgery come into that?

I’ve had pain in my hip area and my lower back, I always thought that it was connected. And then if I was laying down on the ground, for example, I would get like stuck. My brother would have to come and pick me up. The scoliosis specialist sent me to the hip specialist who was different than your usual specialist because he is really interested in preventative care. So he saw me and then did a bone scan on my hips, which involves a large needle and injecting stuff into your hip joint. My hip joints are not sitting correctly in there sockets. So that’s what was causing like the clicking and stuff and I had a torn ligament, which was because the joints weren’t sitting in the socket properly. It was actually nice to have some sort of preventative care so that I won’t have so much to dread when I get old, like a hip replacement.

I know for you it took a while as there’s a pretty big recovery time for hip surgery. I know in London, UK, you were using a cane. How was that experience for you?

Being a twenty-something year old with a cane is different. I felt like walking but I couldn’t. In the airport I needed assistance while all the vibrant old people didn’t. At the airport they put me in a wheelchair because I can’t walk distances and they just put me somewhere and forget me for so long. I don’t know, I thought I’d be embarrassed or something, but I wasn’t at all. And I had this neighbor across the street for me in London and she’s this older Greek lady. And her husband walked with a cane and he had like a health care aid come to his house and take him for walks. He had to get a hip replacement. And she was like, don’t be like my husband, go do your physios. She would yell at me every day to do my physios so that I wouldn’t end up like her husband who had a really bad recovery. A guy once, this was one of the earlier times, I think it was actually the first time I went out by myself without my cousin or anything, and I took the train in London. I was in the station and a guy was in a rush and shoved me. And I fell and he turned around, saw me, saw my cane and just the look on his face was just priceless, it’s like he was pretty sure he was going to hell. He was like, I am so sorry. It was so funny. So I mean it was a bit scary and it was hard because I like to go around and walk and explore. But I was really lucky to have been in London while I was recovering because there were so many little walks I could do without having to drive or take transit or anything like that. So I think I was really lucky with where I was and the place I was and what I was able to do and my cousin was helping me for the first year, I was pretty lucky.

You didn’t have to worry about ice either, right?

Yes, this is the thing with physio, there were so many warnings about like watch out for ice because if you fall your bones are not healed it’ll just pretty much snap. I was so happy that I didn’t have to think about ice just because of how much people were telling me to worry about ice.

So when did you first realize that you had a chronic illness? And how has your journey been since then?

I would say probably around seventeen when I was like “this is not normal.” My doctor has been advocating for me for a long time. My family doctor is the same person that delivered me, so I’ve had the same doctor for my literal entire life. And I’ve had issues with my digestive system my whole life, I couldn’t drink breast milk when I was a baby, for example. From the start I’ve just not had the greatest tummy. So when I started having symptoms he said the symptoms are very clearly colitis. He put me on an anti-inflammatory medication and it worked. So once that happened, it was basically a diagnosis and sent me to a specialist and then it’s just been like specialist after specialist since then with them changing their minds, and trying new things. Lots more tests, just so many things. So many things. It’s just been long and no one listens. It’s really exhausting. And I don’t care anymore, I’m like if I die, I die. Like that’s how I feel I don’t want to go anymore. I don’t want to go to any more specialists. I don’t know if this is like the right term, but it’s almost like health care fatigue.

How has your experiences of the world changed since your symptoms started?

I mean you’ve always got to think about how tired am I going be tomorrow if I do this thing today? In my culture we stay up late and you’re just like out with your family all night kind of thing and sometimes I’m like on the verge of death but I’m not going to not go to that. I don’t know, it’s tough. I think I also live like a pretty simple life. I don’t drink and I don’t smoke and avoid things that I know would irritate my stomach so I kind of do things that are preventative. And sometimes I hear people telling me about their weekends and I’m like I would have died like I literally would have not woken up. You’ll have to think about where there are bathrooms all the time. That’s scary.

Yeah, that makes a lot of sense. I think your word of ‘preventative’ made sense, you do a lot of preventative work.

Yeah, and it’s just reflexive at this point. Like I don’t even really think about it. I want to eat something like a piece of cake for example. I’m like, I don’t have anything tomorrow so I can eat this piece of cake. Not a normal thing that people have to do or think about.

Which of your symptoms do you find the most debilitating and why?

Probably the really intense nausea and diarrhea because you can’t go anywhere. You don’t want to eat and you have to eat to get well. But it is so hard to get anything inside of your body. And then when it gets in it just goes out right away. It’s just exhausting and it causes a lot of fatigue because you’re not getting electrolytes and you’re low on iron. And that causes such fatigue, it’s just hard to have something that makes you so tired when you’re in your twenties. And tired is the wrong word for fatigue because it’s like your body has powered off while you’re still trying to be awake, but your body is not responding, like the Wi-Fi is not connected.

What has been the most helpful for you as you’ve gone through this journey?

Well, I’ve mentioned my family doctor before, so him advocating for me has been the best. It’s just so nice to have an actual health care professional on your side. And my siblings. And my mom came with me to appointments as I said. So just having people that are concerned for your well-being. And when I’m always giving up on getting any kind of treatment, my sister makes sure I stay on it. My brother is just like the gentlest soul and now he’s in medical school, but he has been and still is very, very good at caring for me and others. So the most helpful is having a support network, without them I don’t know what I would be like.

Thank you Dania! Dania is an amazing English Literature instructor and is very close to completing her PhD at the University of Calgary. She is also a creative writer and has a book in the works, so stay tuned for that! Her writing focuses on global literatures, particularly Arabic speculative fiction. Her work often presents Arab, Muslim women as agents in themselves outside of the harmful Western narratives.

It is time for another instalment of the Sava Wellness Community interview series! This month we hear from Alexis (she/her) from the US. Alexis speaks on many different topics including her diagnosis of Pulmonary Hypertension at a young age; ableism and the pandemic; internalized ableism; and wanting modifications in the workplace does not take something away from an abled-bodied person, but allows people with disabilities to work effectively. 

Alexis is very open and speaks a lot about the different forms of advocacy in the chronic illness and disability community, please make sure to watch her interview!

You can find and follow Alexis on Instagram, YouTube, and TikTok @takeabreathwithalexis Make sure to follow along to see how Alexis is a natural advocator and creates her awesome digital content!

Sava Wellness was created to help spread awareness about chronic illness. Head over to the booking page to see how you can book Sarah for speaking engagements about inclusivity and chronic illness. Sava Wellness also provides one-on-one virtual support appointments.

In this month’s Sava Wellness Community Interview Series we get to discover the experiences of Raegan (she/her). Raegan has a different perspective than the other interviews we have had so far because she always assumed that her symptoms were how her body existed. This is an important point to note because if you have something that is making your life difficult to endure, this is not “normal” and you should talk to someone who can help you (like Raegan found with her caring doctor). Please read on to learn more about Raegan and her new business!

Hello Raegan! It is great to talk with you today. Could you please tell us a little about yourself?

I live in the US. I live part time in NYC and part time in Miami. I have an amazing wife and stepdaughter. They are my world. My boxer dog, Leila, crossed the bridge almost 2 years ago. Leila was my soul dog and the loss was extremely difficult for me. I don’t know how I would have handled it if not for the love of my wife. My all-time favorite thing is going to Disney World! While there, I love taking photos and documenting all the magical sights. Disney means a lot to me. It’s a place where I can freely be myself without judgment. Additionally, I love animals, reading, and spending time with loved ones. 

What terms do you like to use in relation to your illnesses/disabilities?

Autoimmune or chronic illness. I don’t necessarily use the terms often, but on occasion if I am discussing my illnesses, that is how I refer to them. More often I just refer to them by name (ulcerative colitis, endometriosis, chronic fatigue).

If you have a job outside of your chronic illness and want to share about it, can you please tell us what it is?

I am a LMSW (masters in social work). I have been working as a clinical therapist for over 10 years. During the shutdown in 2020, I began working remotely, and have been remote ever since. 

Do you have a diagnosis for your symptoms?

I was diagnosed with Endometriosis in 2006, Ulcerative Colitis in 2017, and Chronic fatigue in 2021.

Does having a diagnosis help you?

I had symptoms most of my life. Some relatively mild, others severe. Receiving a diagnosis was extremely helpful in that I was able to get medication that actually helps me. It’s also helpful now that I am at least aware of what’s going on and how to better help myself. 

How long did it take for you to get a diagnosis?

I wasn’t necessarily aware of the severity of what was going on with me, so I’m not sure that I was actively seeking a diagnosis. So although it did take several years to be diagnosed, this was probably my own fault. 

When did you first realize that you had chronic illness and how has your journey been since then?

My symptoms got worse and worse. Eventually they got so bad that I ended up bedridden, and then hospitalized for quite a while. This is when I was diagnosed. Since then, it’s been a rollercoaster, but I was so lucky because my doctor was incredibly caring and made certain to figure out the correct medication to best help me. This medicine has been extremely effective and my symptoms are much more manageable. 

How has your experiences of the world changed since your symptoms started?

Due to the fact that I’ve had many of the symptoms for most of my life, I can’t really recall knowing any different. This is why I was not actively seeking a diagnosis; I thought this was just how my body functioned. 

Which of your symptoms do you find the most debilitating and why?

During a colitis flare, the symptoms can be severe. There are times I am barely able to function. The colitis bleeding causes dangerous anemia. In the past, the blood loss caused fainting spells. The pain can be excruciating. Being that the flare originates from active ulcers in the intestine, and ingesting anything will exacerbate the symptoms, there is generally no effective way to treat the pain. This is the case for me personally, some people are able to tolerate various pain pills and other treatments during a flare. 

Can you describe what a bad day symptom-wise looks like to you?

Pain that causes me to double over, sometimes making it difficult to breathe, uncontrollable bleeding, urgent and excessive use of the restroom, unable to get out of bed due to anemia and chronic fatigue, very low body temp, chills, dizziness, and heightened anxiety.

When you have a good symptom day, what do you like to do?

I like to get everything done. Work, cleaning, laundry, food shopping, anything I need to complete. I also like to work out and go walking when I feel well enough. Exercise really helps the endometriosis symptoms, (which can be very painful) but can sometimes bring on colitis symptoms. 

What has been the most helpful for you as you have gone through this journey?

The right medication has been pivotal in having more good days. I am so lucky to have found such a caring and patient wife and stepdaughter. They always want to help me in any way possible, they’re understanding, and most importantly for me they never ever make me feel like I’m a burden. I am so grateful to have them. 

Is there anything you would like people to know about your chronic illness or chronic illness in general?

I hope people can become aware and more understanding of “invisible illnesses.” You never know what someone is dealing with. 

To follow along with Raegan’s favourite hobby, Disney, please follow her Instagram: @disney_raenbow. Also make sure to follow her new business, “my wife and I make homemade, all natural dog treats and biscuits. We just started a small shop on Etsy called ‘Leila’s Pup Treats’ named after my old dog. The site is leilaspuptreats.etsy.com and the Instagram is @leilas.pup.treats”

Thanks Raegan!

In this month’s Sava Wellness Community interview series we get to listen to Trish (she/her) from Canada. Trish describes her seventeen year journey with chronic pain and has a great metaphor to describe how her pain just started one day. Trish also talks about how she manages her pain and illness, and how she has been extremely judged for using societal aids because her symptoms are invisible. Trish also explains how exciting it is to make your world big!

Hello Trish! It is great to talk with you today. Could you please tell us a little about yourself?

I live in a townhouse with my two adult daughters on a quiet cul-de-sac. It is older and has lots of windows, which are great for light during our long, cold winters here in Canada. Our small deck is my favourite summer place, I love to drink tea on it and read a book in the mornings. My pain prohibits me from getting up early every day, and slow starts are the best thing for me. Of course that doesn’t happen every day, and I try to make the most of the days when it does. I was a stay at home mom for years and am now a carer for a chronically ill daughter.

I use the terms ‘chronically ill’ and ‘disabled’ when thinking about myself. I find that terms have changed over time, but while these are older they are still applicable for a lot of chronically ill persons. To me ‘disabled’ is the opposite of able-bodied and is a helpful framing for how I navigate the world in my body. I experience chronic pain and find that this term is much less understood, and when/if I use it I am more likely to hear everybody’s pain stories, relevant or not.

Do you have a diagnosis for your symptoms, if you don’t, can you please describe your symptoms? Does not having a diagnosis affect how you live your daily life?

My illness diagnosis is complex in the fact that it doesn’t have an easy label, but it is physiologically based. It started with pain, and it took many different professionals before I found someone who knew what was happening. When I encounter someone who does not believe in chronic pain, I know that it is not all in my head because it is physiological. People want to know what my chronic illness is called, as if they are more comfortable with a label. To me a label doesn’t matter, because it doesn’t change how I feel regardless.

My symptoms have grown the longer I have chronic pain. In addition to the pain throughout my body, I have brain fog, loss of strength in my limbs, side effects from my medication (issues with weight gain, dry mouth, burning mouth syndrome), balance issues and general instability, and mobility issues. My chronic illness started seventeen years ago, and the words ‘chronic illness’ were not even in my or most people’s vocabulary. One day it just started. Someone told me that it is like a tap dripping slowly into a glass of water and finally it overflows, and that is the start of the pain. Throughout my journey I have tried many different unsuccessful treatments to try to ‘fix’ my body, and now I have strategies to help me manage the pain and illness since there is no fix. I live with pain and disability every day.

How has your experiences of the world changed since your symptoms started?

For quite a while after my symptoms started my world was much smaller. I had to give up a lot of things. Over the years though, I have taken back parts of the world and made it fit me. I don’t feel as limited as when it first started. 

I’ve found supports that work for me to navigate daily living as best as I can and reduce my limitations. For example, I have a handicap placard because I am unable to walk far distances. I always use it because my mobility exhaustion comes upon me quickly. I have had lots of judgemental looks for using the handicapped parking spots and it hurts. I can remember two extremely hurtful incidents where I was approached and scolded for using them. I have had to grow a thick skin. It’s sad that we are judged and punished by society (especially for those with invisible disabilities like myself) for something that we did not ask for and already struggle to deal with on a daily basis. I also use a wheelchair when going out for long periods of time or walking long distances. For example, when travelling my daughter (the one who isn’t chronically ill) will push me in the wheelchair in airports or on long walks. We have been able to do incredible trips because of this mobility aid—I would never be able to walk around a Disney park, for example, or through crowded city hubs—and I have chosen to have the mindset that my wheelchair isn’t a limitation, it’s a way of being able to do exciting things that I couldn’t otherwise do.

Which of your symptoms do you find the most debilitating and why? What does a bad and a good symptom day look like for you?

My most debilitating symptom is the pain. It is with me constantly and is very tiring. A bad day symptom-wise is when I can barely get up from the couch. The pain makes my whole body feel physically heavier than it is. On good days I like to go for walks, be outside in nature, or bake something nice for my family.

What has been the most helpful for you as you have gone through this journey?

My daughters have been my biggest support and cheerleaders. They are always there for me, they encourage me to keep going and support me when I need help. They give me unconditional love, no matter what.

Is there anything you would like people to know about your chronic illness or chronic illness in general?

I know that people with chronic illness don’t like to ask for help, myself included. My message to them is to ask for help, it is not a weakness, it is a strength to acknowledge your limitations. Make your world as big as you possibly can!

Thank you Trish!

For this month’s Sava Wellness Community interview series, I have the pleasure of interviewing Laurely (she/her) from the US. Laurely is passionate about bringing awareness to endometriosis and advocating for yourself by finding the right doctors. She has found functional medicine to be essential to her healing and hopes that the healing continues. Laurely describes herself as a person who is chronically ill. Laurely “chose this description because my existence is not defined by my illnesses. It’s helpful to remember that I am not my conditions. I still have a lot to offer as a person.”

Hello Laurely! It is awesome to talk with you today. Could you please tell us a little about yourself? 

I have a very close family including my fur baby, Okey. We love to watch tv together, including my fur baby. Personally, I like to read, do qigong and yoga, crochet, disneybound, draw, listen to calming music and watch Chinese dramas. Since the pandemic, I started working from home as a virtual assistant (billing and scheduling), English teacher and tutor. It can be a hectic schedule, but improving one’s health can be very expensive. And, I really do love the mixture of what I’m able to do from home!

Do you have a diagnosis for your symptoms? Can you tell us what it is and describe what that means for you? How long did it take for you to get a diagnosis?

I’ve been diagnosed with endometriosis, histamine issues with foods, and mold toxicity. I’ve had endo for about 20 years and struggled in silence for the first batch of years thinking the pain I was feeling was just the price of being a woman with a cycle. It wasn’t a long diagnosis process for endo because the first doctor I actually told about it labeled it immediately. However, she said I had only 2 options: surgery or birth control. I was young and deathly scared of the word surgery, so I started taking birth control. That worked for about a year, but I developed PVC (premature ventricular contractions) at the same time, an effect, I learned, from the heightened chemical levels in my body, probably affected by taking the birth control. And, the pains came tumbling back with the alternative birth control option. It wasn’t until I started seeking out naturopathic and functional medicine doctors that we discovered just a year ago that, in addition to endometriosis, my body was highly toxic with a particular type of mold. My toxicity level was almost off the charts.

The histamine intolerance was discovered by chance through a Zoom call with a friend about 2 years ago. This friend has her own health struggles and encouraged me to try a low histamine diet and seeing if it helped. I was amazed at the lowered level of pain I felt after being on the diet for a few months. It didn’t get rid of the pains, but the difference was huge. At some point, I had developed an issue with histamine in foods and it’s still a problem that affects my eating habits.

When did you first realize that you had chronic illness and how has your journey been since then? 

When I was throwing up after eating certain foods on my period and my pains were becoming unbearable I knew something was up. When you can’t get off the couch to join a normal family outing, there’s a problem. That eventually developed into intense leg pressure, back pain that felt like I was breaking in half, deep cramping, persistent nausea and becoming couch bound in the fetal position for 24-72 hours just trying to breathe. These got so bad my family wanted to take me to the hospital each time my cycle came on. I was barely able to eat anything or keep any food I did eat down. This meant I lost a lot of weight after 3 days of barely eating if at all. This level of weakness is something no one wants to experience or see someone else suffering from, especially when there are no answers or guidance through it.

How has your experiences of the world changed since your symptoms started? 

Now, my entire routine from skincare to hair care to food is as organic and clean as possible and as low in histamine as I can manage. Seeing the foods that I used to eat still entices me to want to eat them, but at the same time, I see the issues with the foods that are eaten in America. I’ve always heard that America’s food is one of the worst in the world, but I only now understand just how terrible the amount of  chemicals, preservatives, pesticides and carcinogenic products in our foods are. And, I’ve learned how much damage it can all do to our bodies. While food can bring us joy, at the end of the day, our bodies need its nutrients to survive. All we can do is research what we can and make the best choices we can with what’s accessible. It’s much more expensive in the US to get away from nutrient poor foods, but it can become 100% necessary to survival for some of us.

Which of your symptoms do you find the most debilitating and why?

I’d have to say the unexplained, searing pain that runs throughout the lower half of my body is the most debilitating. On my worst of the worst days, I can’t sit up, think, focus or talk. I was taking days off from work each time my cycle came around because it was impossible to be polite around others and get work done in the office properly. One time I made it to work and was sent home a few hours later when people started realizing how terrible I felt. I absolutely hate cancelling on people or taking off from work. But, when the pain would hit, I’d have no choice. And, no doctor can tell me why I feel the pain so intensely and in the places I feel it. Endometriosis in itself is unexplained in origin and reason. So, the pain is extremely hard to rationalize to myself and explain to others. Unless you have it, you can’t understand it. 

Can you describe what a bad day symptom-wise looks like to you?

Thankfully, since I’ve started working with my new functional medicine doctor and she discovered the mold toxicity, my worst days are (hopefully) behind me. But, I still have bad days despite the work we’ve done so far. A bad day has already started with nausea and ovary pain/pressure the days leading up to my cycle. On the day my cycle starts, the pain in my hip and abdomen kicks into gear, and I know I need to situate my work station to my bed, or a comfy, inclined chair. Usually the first few hours are characterized by the pain slowly increasing, nausea stopping me from eating anything else and my leg beginning to weaken. Sometimes a headache follows and I end up fighting sleep the rest of the day. If the pain increases into the night, it’s a sleepless and lonely night just waiting for the worst of it to pass. On these days, I’m not very productive and tend to isolate away from friends and family. My mood during these times is not very good either. There’s just so much going on inside that thinking clearly is beyond my ability and my body goes into survival mode.

When you have a good symptom day, what do you like to do?

This is kind of a little secret of mine, but if I have a really good cycle, I reward myself with vegan marshmallows or chocolate that’s a little less than 85% dark. I’d like to say that I go out and do something physical, but just sitting, reading, or crocheting finally without pain and finally being able to eat becomes so beautiful to me. Match that with a yummy bag of vegan marshmallows, and I’m a happy camper.

What has been the most helpful for you as you have gone through this journey? Is there anything you would like people to know about your chronic illness or chronic illness in general?

The most helpful thing in my journey has been the internal and external motivation from family and friends to find the right doctor for me. I have had many people along the way judge me for not going to hospital or taking conventional medicine or paying all of this money into my health protocol. But, I tuned those critics out and continued in my search. If someone comes to me with an agenda to push conventional medicine on me and make me feel bad, I tell myself I’ve taken the pills, I’ve had the surgery and nothing worked. My health is my responsibility. I will push through as much as I can to continue to see improvement in my health and be surrounded by a medical team and support system who listens to and validates every discomfort or odd sensation I feel. Sometimes, you have to be your own best advocate and keep fighting. There are no ultimate answers in this world for many of the issues we face. I’m not even looking for a life free of all pain. But, if there’s a way for me to live a life of less pain and more happiness around food and activities, I will continue toward it in any way I can.

Thank you Laurely! 

If you have followed along with the Sava Wellness Community interview series, you know that at the end of every interview the interviewees are asked what they would like to promote. Laurely has chosen to promote @endowhat because “it’s relatable, educational and so validating for anyone affected by Endometriosis directly or indirectly.” So please go and follow along to learn more about Endometriosis.

In addition to Laurely’s promotion piece, I (Sarah), would like to also promote that Laurely has an awesome gift box business that contain books, accessories, art, and crochet pieces called @tinkermadegifts and her profile that showcases her fun disneybounds is @thecurlytink (both on Instagram and her business Etsy is here). Please make sure to go and follow along! (And don’t worry, I asked for permission to promote these as well.)

In this instalment of the Sava Wellness Community Interview Series we offer a preview of a different and exciting episode where Sarah, the owner of Sava Wellness, is interviewed by Rick Dougherty, who is the creator and host of the “Tall Guy Talks Travel” YouTube channel and podcast series. 

Sarah talks about learning self-advocacy, what kinds of terminology to use around people with chronic illnesses and/or disabilities, her diagnoses of Lyme disease and chronic fatigue and how these impact her life, how to talk to family and friends about your chronic illnesses/disabilities, which includes grieving and much more! The conversation continues on the “Tall Guy Talks Travel” channel where you will get to see brain fog in action, and learn about toxic positivity, myths about chronic illnesses, and what people with chronic illness want, and not want, to hear.

Sarah is a frequent guest on the “Tall Guy Talks Travel” podcast series, but in this bonus episode of “Tall Guy Talks Travel” Rick specifically interviews Sarah about her experiences with chronic illnesses/disabilities. This collaboration celebrates chronic disease month and disability pride month, which takes place during the month of July!

Below is the preview video on the Sava Wellness YouTube channel. You can find the full interview over on the “Tall Guy Talks Travel” channel here.

Sava Wellness was created to help spread awareness about chronic illness. Head over to the booking page to see how you can book Sarah for speaking engagements about inclusivity and chronic illness.

Here is another episode of Sava Wellness Community: Interview Series!

Today listen to Beth as she talks about her IBD (ulcerative colitis) and how having an ileostomy surgery helped her live again. She also busts the myth that having an ostomy bag equals a cure, and talks about how hard it is to have her illness when there is so much stigma around bodies and bodily functions. Beth also talks about how getting a diagnosis is relieving at first, but then you learn about having an autoimmune disease that is lifelong. Through her chronic illness Beth has learned to advocate for herself through pure frustration, realized the need for accessibility in the world, and how easy it is to normalize symptoms in everyday life only to realize how difficult it is when someone asks you to explain them.

When Beth received her surgery, she turned to drawing to help her cope. Each figure she drew had an ostomy bag. Inspired, Beth has created a whole line of prints, stickers, and more!, that feature beautiful bodies with medical devices. Through her art, Beth aims to normalize medical devices and bodies through empowerment. Please check out her Instagram @broken_n_brave and her website https://brokennbrave.co.uk/ 

Sava Wellness was created to help spread awareness about chronic illness. Head over to the booking page to see how you can book Sarah for speaking engagements about inclusivity and chronic illness.

In this instalment of Sava Wellness Community: Interview Series I talk with Adele!

Adele lives with chronic fatigue and fibromyalgia. In the interview she describes her long journey of being diagnosed and how due to her illnesses she has had to create and keep boundaries. We talk about brain fog, how chronic illness can affect your mental health, and how patience towards people with chronic illness is key. 

She also talks about her joy, and passion!, about being a small shop owner and creating her illustrations. Adele talks of how she now enjoys the little things in life and that her chronic illnesses have caused her to not overlook them. 

Also make sure to check out Adele’s lovely illustrations that she turns into stickers, colouring books, enamel pins, and more! Find her on Etsy, YouTube and Instagram @delliesdesigns! 

Sava Wellness was created to help spread awareness about chronic illness. Head over to the booking page to see how you can book Sarah for speaking engagements about inclusivity and chronic illness.

Today starts my new Sava Wellness Community: Interview Series! I have the joy of interviewing Courtney (she/her/hers). Courtney works as a senior scientist, is chronically ill, is a person with an invisible illness and has recently started to refer to herself as disabled. Please read on below to see what we talked about!

Hello Courtney! It is wonderful to talk with you today. Could you please tell us a little about yourself? 

I live in the hot and humid state of Florida, in Tampa Bay, which is considered central Florida, on the West coast. The winters are very comfy, though!

I have a great husband, Rick, whom I have known since 2006. We have 2 adopted cats, who have lived with us ever since they were very young and little. They are senior cats now, and have been with us through thick and thin! We definitely love them like family and don’t know what we’d do without them. 

I don’t have a hobby, at the moment. In the past, I have done some adult coloring books, dabbled in some crafts, and done some cross-stitching and reading. Now, I like to relax by watching streaming series or movies, and I like to keep up with the latest Disney news in the theme parks and beyond!

Do you have a job outside of your chronic illness and want to share about it? (We all know that chronic illness is a full-time job itself!)

I am a Senior Scientist. I assist in Quality Control for pharmaceutical products, to ensure that they are safe and effective to be on the market. I enjoy being challenged and knowing that I am good at my job, but also take pride in knowing that I have a hand in helping patients in need, with everything from common Advil to cancer drugs and even some autoimmune therapies!

Would you like to explain what the terms chronically ill, a person with an invisible illness and disabled mean to you and how they may have changed your perspective?

It is hard to admit that there is something wrong with you. It is sad, frustrating, and you feel you have lost some control. It can be isolating, but can also connect you to other people who identify the same way and are dealing with similar issues. The illness/disability forces you to change things about your life—your lifestyle, eating habits, what you physically can and cannot do; and it can either negatively or positively affect relationships or friendships. It can be hard to admit that you need help, and hard to explain complicated things or things that others cannot see/observe. It has made me look at areas for accessibility; for example, ramps, railings, benches, how to access mobility aids, etc.

 Do you have a diagnosis for your symptoms? 

Yes, and no!

For your diagnosis, can you tell us what it is and describe what that means for you? 

I have a diagnosis of fibromyalgia, and preliminary or suspected PsA (psoriatic arthritis), with HS (hidradenitis suppurativa), and in general, chronic inflammation. I also am diagnosed with diabetes type II, high blood pressure, issues with tachycardia, as well as dysmenorrhea and suspected endometriosis. The dysmenorrhea/endometriosis seems like just such a regular part of my life, since I have dealt with it since my teenage years. The newer diagnoses of high blood pressure and HS do not bother me very much; but I have anxiety and some very mixed strong feelings about the other newer diagnoses of fibromyalgia, PsA, chronic inflammation, and diabetes. They are a bit scarier and frustrating, and can feel depressing.

Does having a diagnosis help you? 

It helps to put a name to what you are feeling and experiencing, and to hopefully, know how to manage it and treat it.

How long did it take for you to get a diagnosis? 

The autoimmune and fibromyalgia took about 6 years of me suspecting something was wrong, before a doctor finally tested me. As for the endometriosis, it requires exploratory surgery, and the surgery was offered to me at age 20, which is now 23 years ago; but when I have tried to request the surgery in the past 6 years, I have been refused the surgery. 

If you don’t have a diagnosis, can you please describe your symptoms? 

I have lots of fatigue; muscle, joint, and tendon/ligament pain, muscle weakness, nausea, some dizziness, high/fast heart rate, palpitations, shortness of breath, itchiness and some rashes, headaches, body aches, some instances of numbness and tingling, loss of dexterity in hands and other parts of my body, such as legs. I also have urgent urination, and sometimes very intense pelvic pain that radiates to my lower back. 

Does not having a diagnosis affect how you live your daily life? 

It can feel very scary to feel intense pain, or heart palpitations, or other serious symptoms and not know what is causing them. 

When did you first realize that you had chronic illness and how has your journey been since then? 

The endometriosis was suspected from about age 20, and it started to make better sense around age 35 (8 years ago) when I had increasing instances of pain. As for the fibromyalgia and inflammation/autoimmune disease, I suspected something was off around age 34, but it didn’t really start clicking for me until about age 39. I was first tested at age 40, right in the middle of COVID-19 in 2020! There have been many doctor appointments not only with my primary care/family doctor, but with specialists such as rheumatologists, lots of bloodwork, and a few other tests, including things like X-rays and ultrasounds. Sometimes, you feel validated and other times, you feel you are back at square one and you are unsure of what is really going on or if the diagnoses are correct.

How has your experiences of the world changed since your symptoms started? 

I like to stay at home more. Sometimes, I feel like I am missing out on experiencing things. I value my rest, and don’t feel that I have to be as productive every day of the week.

Which of your symptoms do you find the most debilitating and why?

The fatigue is the hardest part. However, the muscle pains make it difficult to walk or exercise, or to have stamina for activities. Currently, my high heart rate and shortness of breath make me very cautious to even do simple chores around the house, but I also have to be extra-careful in the heat and sun.

Can you describe what a bad day symptom-wise looks like to you?

For me, I have lots of aches and low-grade to medium pains or overall body aches, and might not be able to walk comfortably or might need to limit the use of one arm, or favor one leg on a certain day. I will also feel very tired or fatigued, both in the sense of needing sleep and being lethargic with no energy. Sometimes these symptoms are accompanied by a headache.

When you have a good symptom day, what do you like to do?

I try to do some extra chores or go for a walk, or maybe do something I was putting off, like going shopping or getting a pedicure.

What has been the most helpful for you as you have gone through this journey?

Having people to talk to, and honestly, having easy access to Google and articles from entities like Mayo Clinic, so that I can do some research and I can be able to advocate for myself. It has also been helpful having the support of friends and family, and having doctors who are finally listening (somewhat!) and willing to suggest some trial-and-error therapies. I am also grateful to have a desk job as of 2 years ago, so that I can stay off of my feet and my body can be in a more relaxed state for the majority of the day. 

Is there anything you would like people to know about your chronic illness or chronic illness in general?

The biggest things are that 1) Most of the symptoms are “invisible,” and 2) There is no easy fix. You will not magically get better, especially with diet and exercise, as so many people like to suggest! You may start to feel better or mitigate some symptoms, but nothing seems to be a cure-all, especially diet and exercise, or yoga. Much more research needs to be done. There is a lot of trial-and-error to try to mitigate symptoms. And, 3) Weight is not an indicator of health and BMI is an outdated and problematic (i.e. racist, ableist, misogynist) measure of someone’s health. Thinner people may have illness or be healthy, and overweight people may have illness or be healthy. We have to do a better job, as a society, at looking past people’s weight. People do not always have control over their weight or their health, nor should they be judged negatively for being ill or unhealthy.

Thank you Courtney! 

You can see Courtney’s love for the theme parks in her picture and description of it. The picture shows me tired and a bit achy, but making an effort to do some things outside the home, like visit a Disney resort (Wilderness Lodge) for the holidays. Taking it slow, and enjoying the details. This is a relaxing resort, with cozy fireplaces, comfy chairs, a babbling brook, and comfort food like Mac n cheese and BBQ meats! Being in a happy zone like this refreshes my soul.

You can find Courtney and her husband, Rick, talking about restaurants and visiting theme parks on the “Tall Guy Talks Travel with Rick Dougherty” YouTube channel and Podcast. Please subscribe to the YouTube here, and also follow along on Instagram @rickdoughertytgtt and Twitter @rick_ear