Invisible Illness

'But You Don't Look Sick...'

'Don't Judge a Person by its Cover'

When I am out and about in public I may not appear to be in pain that doesn't mean I am not in pain. I don't show I'm in pain because I want to live my life just as any able bodied person would. If I was to show the amount of pain I was in all the time then  I would be a very negative person. When I'm out and about I don't always use my wheelchair, I use my crutches, the same type of crutches that you would be given for a broken leg, it doesn't mean I am not living with a permanent disability.   

People have a tendency to make a judgement about a person. When you see a person getting out of a car in the disabled bay for example, but they don't look particularly disabled. You ask the question to yourself "How is that person disabled?  Should they be parking there?"  You may decide that person is not disabled enough and you form a prejudice against him/her.  Imagine that person suffers from chronic pain and can't walk very far, they may be walking unaided but that doesn't mean they aren't in constant pain. Maybe they need that blue badge to enable them to do their shopping or get to their doctors appointments. 


There is very much a love hate relationship with having a invisible disability.  There are positives which include  giving you a chance to blend in with the rest and being selective as to who I share the details of my disability with.  However this can make it harder to accept I'm not physically  who I used to be, I see the same person that you used to kayak and play sports. 

One of the biggest problems presented by having an invisible disability is getting the treatment you need and deserve. My CRPS symptoms, especially early on were not always visible and I couldn't ensure that they would appear when I went to a doctors appointment. This can lead to a feeling of am I being believed?,Or even thinking that the doctor thinks you are a hypochondriac.


One of the less talked about areas of invisible disabilities is side effects. When you have a chronic pain condition you take multiple medications to try and dampen down the symptoms. These medications can often feel like they are doing more harm than good.  I might be a out in my wheelchair but my medications might be making me feel nauseous and knackered. Yet if I was to stop every time that I was suffering from side effects, I would just be existing rather than living. That wouldn't be conducive to a very positive experience and therefore you have to fight and not let those side effects get you all the time.

So thank you for all being so supportive, both through this blog and my Facebook page (@LivingWithCRPS1). But next time someone opens up about their disability, listen and acknowledge what they are saying, don't question it and think about what you might not be able to see.  Most importantly acknowledge the positives you can't see, the strength and resilience, determination and hope that person has. Even if you struggle to comprehend what that person is going through a little encouragement goes a long way to keeping that person going.

Learning to Live with a Disability

In February this year my life changed dramatically, I walked into hospital and didn't walk out again. I haven't walked since. I have gone from being an independent young woman, enjoying university despite suffering from CRPS, to being completely dependent on my family to do the most simplest of tasks. So here we go here are some challenges I have had to face, whilst learning to live with a disability!

The first challenge I have had to to face most recently is not being able to walk. A skill that until it was taken away from me I took for granted.  Not being able to walk is one of the hardest challenges I have faced, I am now reliant on my wheelchair or  crutches. When I go out I feel like everyone is looking at me, I feel different.   I know it is probably out of curiosity as to why I am in a wheelchair, but the negative thoughts still go through my head and can be quite upsetting. Walking is what enabled me to go out by myself and see friends or go out for coffee, now I can't do that. Most streets and shops are not wheelchair friendly, unless I have someone pushing me I cannot get to them, let alone go in the shop. This really annoys me, why does it have to be so hard for a disabled person to do the most basic of tasks, why can't they make pavements smoother? lower curbs sufficiently? make all shops accessible? 

This leads into the second  challenge, loosing a lot of my independence. Having just completed my first semester at university, I had become used to having independence and the ability to do things when I wanted.  Now I am reliant on my parents and friends to do the most simplest of tasks for me. I can't just go out the house on my own,  most of the I cannot go up or down stairs on my own. Meaning I am stuck in my room or the living room which at times can be quite isolating especially if I'm the only one in the house.  Not only that, despite being told its not a problem, it can feel like I'm being a burden on who ever has to help me.  

There are two challenges I have had to face, not just in the last couple of months but ever since I was diagnosed with CRPS (Complex Regional Pain Syndrome). The first is adapting to having to take medications every day just to get through the day.  I wouldn't choose to take these medications as a lot of them have horrible side effects both short and long term, but the fact of the matter is if I didn't take them I probably wouldn't be able to get out of bed.  A lot of the medications I have to take are either not normally associated with pain but with depression or epilepsy, before you ask why, this is because CRPS is a neurological condition which causes chronic pain.  Or I get  a look of shock when the person realises the strength of the painkillers. Despite taking these medications I still end up in pain and sometimes don't want to but I have no choice, it could be a lot worse if I didn't.

The second is probably the biggest and hardest challenge that I have had to deal with, that is acceptance. Acceptance that I have CRPS, that there is no cure and that I am going to have to give up playing sport and deal with this condition for a long time. Accepting that I have a chronic pain condition has been extremely difficult as  I don't want to admit it. But in order to deal with it acceptance is key because fighting it against it could only make it worse. Only by accepting the condition and the situations it puts me in am  I able to learn to over come them. So in the last year by accepting that I have to live with it or along side it allows me to put on a smile and look (even when I'm not feeling very) calm most of the time. 


The four challenges mentioned are just a few of the many challenges, both large and small that I have had to face both before and after diagnosis. But I hope just by mentioning a few of them, you start to get an idea as to what its like to learn to live with a disability.