The Spoonie Diaries : posterior uveitis and Sjogren’s syndrome with Mel Bowden

Today’s Spoonie Diaries is been taken over by the lovely Mel Bowden who has been living with auto-immune diseases for three years. On her blog, she shares her experiences to help others in similar conditions and is a disability activist – especially in academia!

So, let’s get to know Mel!

What was your initial reaction to hearing your diagnosis?

My reaction to my diagnosis of posterior uveitis was shock. Losing my sight was never something I had considered as a possibility, and certainly not in such a sudden and permanent way.

My diagnosis of Sjogren’s was more of a relief. I had been suffering from a wide range of pain symptoms and significant fatigue, and the diagnosis confirmed it wasn’t all in my head.

Neither diagnosis was completely satisfying, in that I still have unexplained symptoms that my doctors are investigating, but these things become simpler to navigate with the validation of a couple of diagnoses under my belt.

How much did you know about your chronic illness before you were diagnosed? What was your initial reaction?

My two particular auto-immune conditions were completely unknown to me when I was diagnosed. Posterior uveitis is considered a rare condition, and Sjogren’s is remarkably underdiagnosed. I was familiar with the concept of chronic illness before diagnosis but didn’t expect it to happen to me so suddenly.

There was a lot of grief involved with my initial diagnosis, and a new unsureness of what the future held for me.

What is one thing you’ve learnt from being chronically ill?

My priorities completely shifted as a chronically ill person.

I learnt to be selfish, primarily, and how to put myself and my body first. My specialist who first diagnosed me told me to avoid ‘stress’, and so I spent a lot of time learning what that meant for me. I spent a lot of time researching auto-immune conditions and factors around flares and testing my findings against my own body.

Acknowledging that stress comes in many forms was an important lesson, as it made me acknowledge that flares can happen even if I don’t feel emotionally stressed. Time management is also something

I’ve had to learn as a chronically ill person. I used to do everything at the last minute, and now I try to think about things in advance in case I get sick.

How did you make the decision to openly discuss your diagnosis and journey being chronically ill? Was it an easy decision to make?

The nature of my initial diagnosis meant that I had to be open about it from the start, as it necessitated a lot of big changes in my life.

I had to change a lot of things about how I live as a partially sighted person, especially in regards to my university studies. To control my initial flare, I went on a significant dose of steroids for a long time which seriously affected my body.

This meant that it became important for me to make my limits clear to the people around me and set clear boundaries. When it came down to it though, I began properly discussing my diagnosis as a way of processing my new situation. It helped me put what I was feeling into words and let the people around me know how it was affecting me.

How has being chronically ill affected your life? Have you made major changes?

As cliche as it may sound, it honestly changed my whole life. The way I study, the way I socialise, the way I get around, have all changed.

I’m more proactive nowadays, or at least try to be, in order to mitigate my symptoms. I keep schedules, make plans weeks in advance, go to bed early, rarely drink alcohol, and actively try to stay on top of my stress levels.

I became a vegetarian to help control my flares, and try to be careful with what I consume. I also try to live more, instead of burying myself in grades and assignments.

It’s made me a lot more conscious that the future isn’t set in stone, and so I try to spend more time living in the moment rather than planning out my next ten years.

My physical condition will probably never be what it was before I became ill, and, as hard as that’s been to accept, I’m trying to enjoy myself regardless.

If you could give one piece of advice to someone who has been newly diagnosed, what would you tell them?

Let yourself grieve. It might be a relief to get this diagnosis, or it might be a shock, but either way, it’s still a grieving process. It’s okay to not feel okay. Spend some time processing everything before you make any big decisions, and then find what makes you happy again.

Do you think your physical health has impacted your mental health? Have you ever sought help for it and do you have any coping mechanisms?

Oh, absolutely. I have a history of mental health issues regardless of my chronic illness diagnosis, but my physical health definitely affects my mental health these days.

I find getting sick quite anxiety-inducing, as I know there’s nothing I can do to stop it, and that can affect my mental health quite significantly.

I have sought help for it in the past, and may do so again in the future. In terms of coping mechanisms, I find that being productive (within whatever sphere of capability I have that day) is the best thing, as otherwise I find myself frustrated at everything.

I try not to make it anything big, but where possible I’ll try to get some fresh air, or read/listen to a book, or something soothing like that.

What do you wish your friends and family knew/understood about your illness/disability?

That everything takes effort. Even as someone who doesn’t have a chronic illness, everything takes effort, but when you’re chronically ill you can feel that effort.

As much as I try to push myself to do the things I used to be able to do, like read a 700-page book in one day or cycle for a mile, these things are infinitely harder than they are for a nondisabled person.

Finally, what does chronically living mean to you? Do you have any advice for readers going through similar things?

Chronically living means enjoying life to its fullest extent within my own personal limits. It means making lifestyle choices that keep me as ‘well’ as I can be, whilst still doing things I want to do. It’s all about finding that balance.

I would recommend to readers going through similar things to try and find their own balance, based on their own parameters of what helps them feel better and what they enjoy doing.

A massive thank you to Mel for taking over the Spoonie Diaries! Don’t forget to check out her blog, Lifestyle & Living! Do you want to be featured in The Spoonie Diaries? Send me an email at hello@ktmy.co.uk