Invisible illness:But you look so good!

I have always prided myself on the fact that I can hide my illness; hide how much pain I am in! I like that fact that strangers who pass me in the street see me as a “normal, healthy person,” just like everyone else. I like the fact that I am able to put on a brave face and appear happy even when I am really struggling! I like that by putting on a brace face it stops others from worrying about me too much! But there are also a couple of downsides to this.

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Last summer I took on a physical job working as teaching assistant in a special needs school for a few months before I moved to down to Cornwall. My role was incredibly hard work; I was on my feet most of the day, chasing little ones around the classroom and playground, changing nappies, bending, stretching etc. As you can imagine, after a short time, the pain in my legs, hips and back intensified and flared up repeatedly, and I had to have time off. My employers knew about my condition but I hadn’t really sat down with them and properly explained my limitations before I started as I didn’t realise how physical the job would be. After a while it got too much, I couldn’t pretend anymore that I was fine. I had a meeting with my manager about reasonable adjustments, and, once they were aware of my struggles, I was given a special chair, allowed to sit down whenever I had a chance, could opt out of more strenuous activities etc. As much as it pained me to tell others when I was struggling as I always want to appear strong and invincible, it helped make my job easier! But, because my condition is invisible, I always worried that my co-workers wouldn’t believe me and I was constantly worrying about what they were thinking; did they think I was lazy as I looked fine from the outside? Would they think less of me if I sat out of this activity? etc. So I would always push myself to do more than I should have to make sure others thought I was working hard. Worrying about what others think of you and your condition is a big downside to having an invisible illness.

One of the most challenging parts of having an invisible illness is the mere fact that it is invisible. A person with an invisible illness often looks just like every other person. They look “normal” on the outside, while on the inside, they are often fighting for their life. But, you would never know this just by looking at them. Another example of when my worries/insecurities of what other people think have stopped me from putting my health first is when I have travelled on public transport. On holiday in Italy last year for example, me and Paddy were getting a very busy bus home from the beach one day. He managed to nab me a seat while lots of people were cramming on and having to stand. I was so grateful as there is no way I could stand up for the half an hour ride home – my legs would flare up big time for days after and I’d be stuck in bed on holiday! A pregnant lady then got on and asked me if she could sit down. I didn’t hesitate to get up and give her my seat, even though I was more than likely going to suffer a lot more than her if I had to stand up. I ended up sitting on the dirty floor of the bus with everyone staring at me from up above. So why didn’t I say no, I have a disability?! Because I didn’t think she would believe me. At that point I disliked the fact that my illness was invisible. I was in so much pain on the inside, why couldn’t it show on the outside just this once?! If I told her I was ill I thought she would immediately have judged me on whether she thought I looked ‘ill enough’ based on my physical appearance. I might really struggle to walk more than 50 metres before I have to sit down and I am in constant pain, but at that moment I felt like a fraud.

Me and Paddy on holiday last year! Even though I was in a lot of pain, I certainly don't look sick!

Me and Paddy on holiday last year! Even though I was in a lot of pain, I certainly didn’t look sick!

If you are reading this and have a chronic illness, I am certain you have heard the phrase “but you don’t look sick,” or “you look well” many times. I’m now referring to interactions with friends and family. Those friends and family members who you aren’t as close to as say your mum or dad, boyfriend or best friend. Those friends and family members that you see every once in a while who don’t really know the full extent of your illnesses. When they pop round or see a picture you’ve uploaded on Facebook of you out and about, and say how well you look or assume you are better, it’s frustrating. They don’t realise that in order to go out that day, you will probably have had to be in bed for several days before, that you need help with certain things like showering, that brushing your hair is exhausting etc etc. I know that those people are only trying to be nice and it’s credit to me that I am strong enough to put on a brave face, but I can’t help feeling really misunderstood sometimes. I am however so so lucky to have very understanding and supportive friends, close family members and a boyfriend who have always been able to look beyond my physical appearance and see how much I am struggling. They are able to look hard enough to see what nobody else can.

I used to see a pain psychologist who helped me to deal with my insecurities surrounding my invisible illness. She taught me to not second guess what others were thinking. Quite often, she said, they won’t be thinking anything close to what you think they are thinking, and… even if they are, so what?? It’s unlikely you will see those strangers on the bus again, or those co-workers at a summer Job, so why does it matter what they think of you? Why does it matter if your friends and family think you are getting better? I have people in my life that truly understand and that is amazing. She taught me to try and take care of myself by not allowing their naivety make me question myself. The problem lies with their ignorance about chronic illness; it does not lie with me. I know I am sick, and that should be good enough for me. My god it takes practice to try and think this way, but it’s worth the effort. I am slowly getting better at this :)

Since January my illness has become more visible as I have developed new symptoms on top on my chronic pain condition, including migraines, insomnia, breathlessness, tachycardia, difficulty concentrating, memory problems, extreme fatigue, dizziness and more. These have got progressively worse to the point where I have to use a wheelchair whenever I go out. Whatsmore I actually look a bit ill now – and I can’t even try to hide it with make-up and nice hair as putting make up on and doing my hair requires too much concentration and is just exhausting so I avoid it completely now. My breathing is also very laboured and I get very out of breath when talking which is also visible. And although, the general public, friends and family can now see some of my struggle (by no means all of it though as a lot of my symptoms are invisible), I would much rather be able to hide my illness again!! I would rather look normal and be misunderstood sometimes than have to use a chair and look ill. Yes, the lack of understanding about my deceiving healthy looks was annoying at times, but I would much rather go back to that! So yes… there are downsides to the invisibility but there are also lots of positives! Who would choose to look ill over looking well and glamourous…not me!!

Me in the wheelchair which makes my illness much more visible!

Me in the wheelchair which makes my illness much more visible!

 

9 Comments

  1. readdeeply June 13, 2014 / 11:53 pm

    Spoonie Sophia; I can well relate to what you’re saying, on both counts. When I was diagnosed with fibromyalgia, then HCV 17 years ago, I was still “myself” as I’d been accustomed to. Neither of the conditions were visible, though both were devastating. I was still the tall pretty blonde who turned heads when I walked down the street.

    But three years ago I was on the losing side of a truck vs. pedestrian accident, and have been wheelchair confined ever since. The impact snapped my spine, lodging the lower part behind the upper and is inoperable, as well as caused thoracic scoliosis. Nearly a year in a nursing home left me a changed woman. My complexion changed, the neuropathy and swelling in my legs worsened, and at 51 finally developed my first facial wrinkles (I’m convinced, from the “pain grimace”). And due to neglect, my waist long hair had to be hacked off to ear level.

    But I do not forget what it was like to be sick and look perfectly fine. Since I do not drive, your bus scenario was an everyday thing for me in my transit to and from work. My diagnosis of fibromyalgia was constantly called into question and doubted. And the “remedy” for the HCV, a year long cycle of chemo drugs, left me so ill I sometimes barely made it to the ER 2 blocks away. And the treatment didn’t work.

    The worlds are so far apart, not looking ill and being obviously disabled. I am not able to reconcile the two. Do I wish things now were different? You bet I do. But they’re not, and the wheelchair isn’t optional if I want to get any further than 2 shuffled steps from where I am. Losing one’s beauty is a hard blow, but I am trying to use it to focus more closely on what we all have and are inside. As a single mother, I still have much to teach my children, and this is just part of it.

    I’m so glad that you have strong support in your life. And I am striving to create a sense of community among those of us that are ill, especially for people as homebound as myself who still have kids to raise and dreams to pursue. Modern technology is a lovely tool by which to reach out to others in our situations. So, I shall follow your blog and wish you boatloads of love and joy in your future.

  2. Hayley-Eszti June 14, 2014 / 12:44 am

    Such a relatable post, I’m glad that it can be hidden but it sometimes is a curse too. My brother has special needs so I know just how exhausting it can be looking after them, it must have been so difficult with so many of them! If we didn’t use wheelchairs or mobility aids people would be none the wiser, not until they looked close enough anyway, the signs are always there if you look close enough.
    On a lighter note, you look hot wheelchair or not! I love the red dress! :)

    X Hayley-Eszti | http://www.hayleyeszti.blogspot.com

    • spooniesophia June 14, 2014 / 9:25 pm

      Thank you Hayley :) it’s so nice to meet others who really understand. Haha thanks, it’s only Primarni!! :) hope you’re doing ok, sending you healing love xoxox

  3. sharpandclever June 17, 2014 / 1:21 pm

    You’re really very pretty Sophia! I hope you inspire and educate more people about inivisible illness. I honor you for your strength and courage to face each day with all your symptoms. :)

    • spooniesophia June 17, 2014 / 2:11 pm

      Aww thank you, this comment has made my day!! :-) I hope I do too as raising awareness of invisible illnesses is so important! Thanks again lovely xoxo

  4. Wood Smith June 26, 2014 / 9:07 pm

    Dear Sophia,

    Thank you for the wonderful post. I can so very much relate to your experiences. I too for years tried so very hard to hide my disability. I was diagnosed with Spinal Muscular Atrophy type 3 in my early teens. I cannot tell you how many times I would avoid doing something just so I could keep it hidden. For example, it doesn’t take near as much strength to stand with your knees locked then it does to get up from a seated position. I could hide standing but I could not hide getting up. So I would stand even when I badly wanted to sit. These type things continued for years, tactics of hiding and what I could hide would change, but the behavior of trying to hide continued. Then eventually like you my disease progressed to the point where I could no longer hide. I’m now almost 50 and some major daily activities like walking, clothing, bathing, etc. can no longer be done without aid. But once these major abilities became a struggle I found hiding was no longer a worry. Maintaining my Independence as much as possible became far more important. And it was at that moment I realized how selfish and petty I had been in the past. Thinking I deserved certain things, like say handicap parking, when in reality I didn’t need them. They were only a crutch, aiding me in only hiding my disability rather than a requirement for me to function. I would gladly go back to those invisible days and embrace my struggles rather than not be able to do something like walking at all.

    P.S. You are and always will be beautiful. Smile and never forget that!

  5. Dead Men Don't Snore June 28, 2014 / 3:01 pm

    I find even in my wheelchair, people still tell me that I don’t look sick. The biggest problem I have is with the carers provided by social services, some of whom don’t think I’m too young and healthy looking to need care and tell me I ought to make more of an effort to do things for myself. It is very frustrating but I have had to learn not to let it bother me. I know I’m ill and my doctor knows I’m ill. Other people assuming I’m not won’t change the reality.

    p.s. I definitely agree with the others – loving the red dress!

  6. Samantha Betteridge (@SamBetteridge) July 9, 2014 / 8:12 pm

    Although I don’t suffer from the same illness as you, this post can also is practically how it can be for mental illness! I am almost recovered from anorexia.. I don’t look emaciated, I eat chocolate, ice cream etc, yet there are a few disordered behaviours which remain. Because I ‘look’ healthy, it can sometimes be impossible to try and explain to people why some things are still a struggle. This post is brilliant because it really highlights how looks aren’t everything. Really well written!

    • spooniesophia July 10, 2014 / 10:05 am

      Hello Samantha, that’s amazing you’re almost recovered – you must be such a strong person! You must be so proud of yourself for getting to where you are today :)
      Awww thank you, and glad it helped you feel like you’re not alone in having an invisible condition. Xxxx

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