In this interview Barbara from the UK speaks to her many chronic illnesses and how they have made her world small, making her thankful for her online community. Barbara is an accomplished artist who represents disability through people’s stories and her paintings.

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

I live in quite a nice area of Manchester, which has become more and more expensive to live in as house prices have risen. It’s difficult to find a flat I can afford, but managed to find one for now, but unfortunately it has damp and mould, but doubt I could get anywhere in this area as cheap. I have agoraphobia and my flat is well placed for being able to nip out to local shops, as it’s quite central to the village area and is also on the ground floor, which helps with my mobility issues. I live with my partner and my cat, Darren and Mango respectively.  Mango is a sweetheart and loves being brushed. Darren less so on the brushing front, but he is funny and supportive when things go badly wrong on the health front.

My favourite hobby is my art which is heading towards being on a business footing for the future and has been heading in an upwards trajectory for the past couple of years. I also do yoga when I am well enough as I think this helps to keep things strong and moving as best as they can be.  

Terms I use about myself: chronic illness, disabled, and invisible disabilities. I am trying to learn more about disability politics and am learning about the social model, which is that we have impairments, but it is society that disabled us with its barriers and access issues.  

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? Does having a diagnosis help you? 

I have a few conditions which I now have diagnosis for, which include Joint Hypermobility Syndrome—now renamed as Hypermobility Spectrum Disorder. Scoliosis, Chronic Migraine, Reactive Hypoglycemia, Anxiety and Depression, Agoraphobia and recovering from Complex Post Traumatic Stress Disorder.  

The first severe symptom I got with the joint hypermobility syndrome was the seizing up of my right hip with accompanying pain—it was that seized up, that not even the physio could move it, let alone me. This led on to severe back pains and eventually, 10 years after onset of symptoms, a diagnosis of joint hypermobility syndrome. Having a diagnosis really helped as it made me understand why and what was happening to my body. Made health professionals take more notice of me and not dismiss as just having a bad back and also made me realise that it was an ongoing condition so there is no cure. It was also a shock to realise that I would have issues for the rest of my life and it wasn’t curable. 

The scoliosis was diagnosed in my teens and didn’t cause me any issues with pain at the time but I think it now contributes to my chronic back and hip issues as well as the hypermobility syndrome.

I used to get migraines after I’ve been out drinking sometimes, and I presumed I just got worse hangovers than most people, however they increased during perimenopause and became chronic. I still thought they were just severe headaches until a new partner said you shouldn’t be in this much pain and took me to A and E, where they confirmed it was migraine, which worked out best in the long run as I started getting appropriate medications, though difficulty finding one that doesn’t stop working for me at some point. I now have migraines of varying intensity most days. So it probably took me about 20 years or so to get my headaches diagnosed as migraines. 

I developed reactive hypoglycemia as a result of having an operation called an oesophagectomy due to having cancer of the oesophogus. It was known to be a side effect from the operation for some people, but I was advised it would resolve and also given atrocious treatment on how to treat it, by my consultant, who suggested me eating chocolate when I got symptoms. I have since joined a reactive hypoglycemia support group which is great for advice on treating hypos and the best diet to try to avoid them. I wear a continuous glucose monitor as I am hypo unaware, which means that I don’t get symptoms until my blood sugar is dangerously low, so the CGM gives me an early warning signal that my blood sugar is dropping. I do my best to eat a high protein low carb diet to avoid as many hypos as possible, but still get them about twice a week. Exercise and hot weather can also bring them on.  

I’ve had anxiety and depression since my late teens, it comes and goes and is exacerbated by stress. It wasn’t until I was older that I got medication for it and was able to accept that it is part of who I am. 

I also have agoraphobia and this I’ve had from my 30s onwards. It has been through bouts of remission, but I think now having the physical health issues as well as the mental health, it has exacerbated the situation, so it is very rare for me to go out, and is stressful when I do.  

Re Complex Post Traumatic Stress Disorder. This was brought on by me having complications after my oesophagecomty – which is a massive operation. I had collapsed lungs, pneumonia and fluid in my chest cavity which made breathing a really hard struggle. In the end they gave me a tracheotomy and attached me to a ventilator. When I got out of hospital, I had changed and felt very low and also lacking in emotion. My inner voice had disappeared. I thought all this was the “new you” you get after having had cancer, until a friend convinced me that I should probably seek counselling. It took me to 8 years after the operation to get counselling, and the counselling really helped. My inner voice returned and I was able to experience emotion again.  

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

I first had chronic symptoms from the joint hypermobility syndrome, when my hip seized up, but didn’t realise it was a chronic condition at that point in time and went through 10 years of trying to get made better, and a diagnosis, before finding out it was a chronic condition. In the meantime my chronic migraines developed and I tried numerous preventative meds until finding one that worked for me for 10 years. So it was mainly the back and hip pain that was an issue.  I developed the reactive hypoglycemia about a year after the op and that meant that I can’t really eat out anywhere as I’m prone to reacting to it and getting sweaty and shaky and having to have some fruit juice or a mix of fruit and nuts, depending on how low I am. Incorrect treatment can lead to rebound hypos and it’s not always predictable. About 4 years ago my chronic migraine preventative meds stopped working and I’ve pretty much had daily migraines of varying intensity ever since. This is probably the most wearing thing to be dealing with. Followed by the hypos. The agoraphobia means I very rarely leave the house, but sometimes will steel myself to nip out for a pint of milk if migraine is not too severe and it’s not in the time frame of possibly having a hypo.  

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

My experience of the world has changed as I now have more severe agoraphobia so very rarely leave the house, most of my friendships and activities are online, so the internet is really helpful with that. I do find that if my migraine is not too severe I can sometimes cope with doing a bit of painting and that can distract me from the pain, but if it’s too severe I just go to bed with an eye patch on and watch tv on very quietly with my good eye—the one on the left.  The meds usually make me fall asleep, but this can cause issues as then I sometimes can’t sleep at night—so my body clock gets out of sync, which is really annoying for my partner as he works normal hours. So my world has gone much smaller since my mobility issues, migraine and hypos and is mainly online. 

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

A bad day is one with a severe migraine where I have nausea and severe head pain and the meds don’t work. Then I may try to eat some salty food, as I crave that with the migraines and that can lead to me having a hypo. I keep a small carton of fruit juice next to the bed and a plastic container filled with fruit and nuts, and my blood testing kits. Sometimes I get a rebound hypo. Oh forget to mention I also have to sleep sitting up because my stomach is in my chest with no valve, since cancer op. I sometimes get projectile liquid acid reflux so that would probably start off in the early hours, so would be having lack of sleep as well as other symptoms, and pains in my joints from my joint hypermobility syndrome so inability to get comfy in bed. Subluxing of hips so pains in my hip joints.  

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

A good symptoms day, I can be symptom free on some days, but not had one for a long time with no migraine, or hypos, and very little joint pain. On a day like this I would most likely do some painting and also take part in my yoga very enthusiastically, rather than trying to find a yoga to combat that days joint pains. 

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

I have learned how much we can put up with and that the will to live is very strong. It has led me to have an interest in disability and disability politics and also led me down the path of painting portraits of disabled people and people telling their stories to go with their portraits. It has made me realise how much disabled people are dismissed by medical health professionals, especially if they have less well known conditions or aren’t diagnosed. This is why, in my portraits of disabled people, when they tell their own stories it has to be done in their own words. We are not listened to or heard enough and our voices need to be amplified.  

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

I think as regards many chronic illnesses, the medical profession needs to actually listen and learn from patients. Recently in the UK a young woman with ME has died, she actually had a GP and her GP was on side and kept on sending her to hospital but the hospital continually sent her home. She was too exhausted to eat and chew and was begging for them to set up a feeding system for her to enable her to get nutrients into her body. Her last letter to her GP she said she did not want to die. But she did. Chronically ill people need to be listened to and their symptoms taken seriously by the medical professionals, both GPs and hospitals.   

My most important thing is my art and getting my portraits of disabled people with their stories out to as wide a world as is possible my website is: https://barbarahulmefineartist.com/
Instagram https://www.instagram.com/barbara.hulme/  @barbara.hulme
Facebook  https://www.facebook.com/BarbsJewelleryAndFineArt

This portrait of me represents my hypermobility.

Thank you so much Barbara!