Pt 2 Stigma of living with chronic illness

30th April, 2017   |    By Bethwyn   |    7 min read

Hi again! So this is the second installment on chronic illness (Read part one here) – specifically around Chronic Fatigue Syndrome. I’m Bethwyn, your guide of sorts through this complex and often confusing issue.

Last time, I talked about common symptoms relating to CFS, and gave you an idea of what my mornings are like. This time, I’d like to talk to you more about the stigma that is associated with chronic conditions, a little bit on other conditions that are often found alongside CFS, and some of the coping skills I’ve developed over the years for keeping optimistic.

I’ve had quite a few negative responses to how sick I’ve gotten – some from friends and family, some from people I’ve just met, and a LOT from myself. Some people have almost blatantly said to my face that they think I’m lying, some give me advice on ‘how to get better’ (this advice usually involves eating better and taking vitamins – and for goodness sake get some sunshine!), and I often get the dreaded question from frustrated individuals – “are you better yet?”

But here’s the problem…

Often people suffering with chronic illnesses won’t actually look sick. They’ll be feeling it though, trust me. All the symptoms I mentioned last time – problems in cognition, constant fatigue that’s only made worse by trying to exert yourself, pain all through your body – people can’t actually see these things when you’re experiencing them. And, since many cases go undiagnosed, sufferers can spend years trying to get a proper diagnosis – all the while being told how to make it ‘better’, or worse, that it’s all in their head.

And with people – including those we love and trust – telling you that you need to toughen up, or that you’re overreacting, it usually doesn’t take long before you start believing it yourself. There is an enormous amount of guilt that goes with having a chronic illness – at least in my experience there is. I can only speak for myself and information that I’ve gleaned from some others. But, in my case, I still feel guilty, ashamed, and upset whenever I have to miss something because of my health. I often feel like I’m letting everyone down for whatever reason – be it a social event I can’t make, a class I can’t attend, or the fact that I’m not living the life that my family want me to be able to have.

In addition to being told that we don’t look sick, people with CFS are often also thought of as hypochondriacs because of many varied symptoms and a lack of knowing what our body is going to do next. Sometimes we’re seen as downright lazy – just trying to remove ourselves from having to do any hard work. From the people that I’ve met who have chronic illness, this couldn’t be further from the truth. Most people with chronic illness want so desperately to be able to do things – to have a regular job, be able to do sports, have a hobby that doesn’t involve lying in bed staring blankly at a screen or a page. You can see how the stigma can be extremely damaging.

In terms of other conditions experienced alongside CFS – they are many and varied. For example, I have been diagnosed with about five of the co-existing conditions – including Irritable Bowel Syndrome, which gives me almost daily pain and discomfort. Other conditions include – fibromyalgia (a loose explanation of this would be widespread pain in about 18 different points of the body, lasting for at least three months), depression and/or anxiety problems, interstitial cystitis (a urinary tract infection that just keeps coming back, regardless of treatment), and sensitivities to things like temperature, sound, and light. To give you an idea, I have been diagnosed with almost all of these things, with a tentative on a couple of others – for example, I haven’t been diagnosed with fibromyalgia, but I and my loved ones suspect that I have it to a lesser degree.

A lot of these conditions (including CFS itself) can be managed with things like a good diet, a good sleeping pattern and general maintenance of your health. Having said that, it has taken me a long time to get to a point where I can keep myself in a relative equilibrium – things like taking supplements and vitamins with my breakfast have now become second nature. Also – to sound somewhat like a nagging parent here – going to bed at a reasonable time can be like a gift to your body in this situation. Late nights are hard to swing – if you’re going to go out with friends, you have to make sure you have the time the next day (and maybe the one after) to recover from your fun.

In terms of mental health and keeping cheerful – this can be as difficult as maintaining physical health. Though, having said that, they both go hand in hand – if you’re feeling physically unwell, then mental illness can take a downturn as well. Depression is common among people with chronic illness – it can be difficult to avoid. When it comes to managing things like depression and anxiety issues, trying to keep your mind occupied despite the illness can come in handy. Things like reading and watching TV shows and such may sound boring, but they’re what have kept me sane for some time now.

Any crafts you can do in bed can also work – it really depends on the person and what they like to do.

Of course, seeing a counsellor or having someone to talk to definitely helps (check out the finding help section here at TINO) – having a secure social network is great! Getting out in the sunshine helps too, when you can.

As I said, though, this is all relative. Personally, I like to settle down to a good book when I can’t deal with much else. When I’m feeling physically drained but still somewhat mentally capable, I can sit up in bed and do my study and other work (like blog posts) quite well. Of course, it takes a lot longer than if I was able to get up and go to my desk, but I’m still getting things done. In terms of my diet, I drink a lot of green tea for it’s calming qualities (plus, I like tea) and I’ll usually try to eat healthy – although that can be difficult when you don’t have enough energy to prepare food properly! Basically, though, if you have a chronic illness, you need to find what works for you. If it means taking extra supplements and staying in bed as long as you can, then do it. You need to do what’s best for your body and your mind.

Finally, I’d like to mention a website that I’ve found useful in times of lowness. It’s called “But You Don’t Look Sick” and has been created by a woman called Christine Miserandino who has Lupus – another chronic condition. I recommend reading The Spoon Theory [TINO Crew note: This is really worth a read – we loved this way of explaining what is is like to live with a chronic illness] as this is good for people who don’t have a chronic illness to understand what it’s like. However, the whole site is filled with useful resources and articles which are worth a look.

So, that brings us to the end of another entry! Thank you for taking the time to read a little more about chronic illnesses. I hope that this has been informative, and I look forward to writing the next post which will look into possible causes and treatments. Once again, my name is Bethwyn, and I have Chronic Fatigue Syndrome. ‘Til next time!

be sure to also check out Bethwyn’s other stories about living with a chronic illness.

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Chronic illness

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