Back with another invisible illness story!
I bumped into Molly on the seafront a couple of weeks ago and noticed that she was using crutches. Confused, I asked her why she was using them, and she replied saying ‘Well these are for my invisible illness!’. And of course I quickly asked her if she would like to write her story on my blog!
This tiny experience made me realise that even for someone who is fascinated and educated on invisible illnesses, I still naturally asked Molly why she was using crutches, unaware and not thinking that she’s probably going to get asked the same question at least 10 times more that day, and trust me it gets tiring to respond to! People who use canes, crutches, wheelchairs or any other aid to help them with their invisible illness are always going to be asked ‘what’s wrong? Why do you have that?’, and a stream of other repeated remarks and questions that will seem ongoing forever after responding back with a memorised story which can seem like a daily chore.
The worst thing is being questioned, as if you’re lying. If you see anyone with an aid that’s used to support them or highlight an invisible illness, I think that it’s better off asking them ‘Have you got an invisible illness?’ and ‘Would you like some help?’ (If the person seems to be struggling, otherwise your kindness may seem patronising).
To anyone who uses a visual aid, I’d highly recommend sharing your story on social media, let your friends, colleagues, and family know, share what makes you you, as believe it or not your invisible illness is a part of your identity, and is involved around everything you do! You won’t avoid repeated questions, but at least you will cut down the amount of repeated questions asked, and educate people at the same time! Thank you to Molly who has been brave enough to share her story! Here it is!
Name/s of your condition?
Complex Regional Pain Syndrome (CRPS) AKA Reflex Sympathetic Dystostrophy Syndrome
How long have you had it for?
I’ve had CRPS for 8 and a half years but have only been diagnosed for 5 years.
What is CRPS?
It’s a chronic pain condition that is triggered from a minor injury or operation. The pain is not at level with the initial injury and can spread at any given moment. The pain is a burning, stabbing, pressure, ice cold, clammy etc, it’s basically the worst thing imaginable with every type of pain moulded into one. I describe it as being trapped in between 2 cars while they’re on fire and they’re being hit by lightning all at the same time, but I’m not dramatic at all haha. It’s rated 42 out of 50 on the McGill Pain Scale, a scale used by doctors in order to define and rate how much pain a patient is in despite the look on their face or how they are acting, the higher the number, the greater the pain. CRPS is rated above the amputation of a finger or toe without anaesthetic or unprepared childbirth, just to name a couple.
How did you get the condition?
I fell down the stairs on a school trip when I was 12 and got a hairline fracture in my toe. I’m now 20 years old and have full body CRPS with it only intermittently in my left arm, I lost the use of my right arm completely during school and regained it by forcing myself to learn guitar as it was something I was determined to do, pain or no pain. I’m currently writing a dissertation about music therapy and CRPS for my final year at BIMM! I use crutches regularly now and am a lot more active than I should probably allow myself to be, however being a on a student budget in Brighton means it’s difficult to live without a job although everyone’s always been lovely and understanding so it makes it so much easier!
How have you dealt with it?
I have spent a lot of time in hospitals throughout my teenage years in London and Bath on inpatient stays 1 week – 3 weeks at a time to work on rehabilitation to get me living as close to how a healthy person my age should be living, starting with realistic goals as when I was 17, university and moving out from home to live independently was definitely an unrealistic goal, however a year later I still did it! I just push myself to do things everyday it’s never easy but it’s worth it in the long run!
Is there treatment for this condition?
There is no cure at all however there are ways to get around the condition, it’s essentially learning how to live with it, through rehabilitation and medications. I’ve had a lot of medications such as gabapentin, pregabalin, amitriptyline, codeine etc but I am now on opioid medications, tramadol and morphine in oral form. I’ve been abandoned by my pain management team because I “look like I’m doing fine” but am back on the waiting list and willing to go in with a fight to get new treatments such as infusions and Spinal chord stimulation that I learnt about at a conference for the condition that I recently told my story at for Burning Nights.
Did you ever find it hard to speak about and why?
It depends on the situation, I love educating people about the condition but I do find it hard to speak about if people aren’t open to learning about it, it’s difficult for people to understand sometimes. Sometimes they don’t want to hear what you have to say as they think it’s an excuse for not being able to make social events etc. It makes me feel vulnerable to open up to some people as I’m sure all with invisible illnesses do, you’re sharing a side to someone that not everyone can see, it makes you wonder if they’ll just see you differently to how they did before.
Do you know anyone who has the same condition/s as you, and if not has that been hard to know that no one you know has it?
I know quite a few people with the condition now as the hospital stay in Bath was with 4 other people my age with the same condition and we all went through the rehabilitation together it was amazing to have the support of people feeling exactly the same as you, it was very surreal. I also met a lot of people last month at the Burning Nights conference which is ran by Victoria, a CRPS sufferer herself, she started the charity in order to connect other sufferers so that people don’t feel so isolated with the condition, she raises money and has genuinely saved lives through the charity. She’s an incredible woman. It helps so much to know that you’re not alone.
Has your condition lead to other illnesses?
I have depression and anxiety as a result of my CRPS due to feeling lonely and sometimes isolated due to having to handle life differently to a healthy person my age. I’d say I’m in a really good place at the moment though and am a lot happier and less anxious even compared to a year ago! I am currently being investigated for fibromyalgia, another chronic pain condition that’s similar to CRPS, fibro is a condition I’m still learning about, it’s quite common to have both of these conditions together though.
What would your advice be to anyone who is dealing with an invisible Illness?
Talk to people about it as much as you can. Educate the people that have doubted your illness and never be ashamed to talk about it. I have learnt especially from Naz’s speech that you can do anything you put your mind to no matter what and people will respect you more from being open about your condition and in the long run will appreciate you being open with them about it. Do whatever makes you comfortable but never feel ashamed of your invisible illness.
What would your advice be to people who are trying to help someone with an invisible illness?
Never make anyone with an invisible illness feel guilty for not being able to do things because of it, I can guarantee they wish they could do everything you want them to, they’re just not able to do that. Respect their needs, wishes and things that can help them, never make them feel guilty for talking about their condition as it’s probably taken them a lot to be able to. Also, if they need to use any aids such as crutches, wheelchairs, canes etc some days but not others, respect that it’s probably taken a lot to use them, it doesn’t mean they’re attention seeking and it definitely doesn’t mean that they’re ‘putting it on’.
Wow! What an amazing story! Can you imagine your life turning just because you fell down the stairs when you were 12 years old? Powerful isn’t it? Despite the pain you’re experiencing, never give up and keep doing what you’re doing Molly, as we are never given anything we can’t handle so you must be the strongest person ever! Thank you to Molly for being inspiring to me, and I’m sure this post will inspire loads more people to!
Don’t suffer in silence and remember that the first step to recovery is accepting your invisible illness, don’t be hard on yourself or punish yourself for feeling like you’re ‘different’. If you think that you have an invisible illness, do everything you possibly can to chase it up and pin point what it is to learn how to manage and live with it.
I hope this post has been inspiring, spread the word and raise awareness to educate and aware people of the world of invisible illnesses.
Don’t mask your pain so much that your mask becomes the new you, as you should always express your real identity that is true to you. (sick, I’m proud of that statement-no copying, I’ll sue ya).
If you would like to share your story through my blog, please don’t hesitate to get in touch with me!
Thank you for reading,