I don't tend to really write about my health online, not only because I don't want to dwell on the fact that I'm not well, but only because I don't want it to seem like I limit myself. I don't want those prejudicial thoughts that immediately pop into people's heads that I can't do things without asking me first. I've been having a real hard time lately due to the weather changes, stress and anxiety so I thought it was fitting that I lay out some of the problems I experience that probably a lot of other people go through too.

Not Looking Ill

This is something that people with 'invisible illnesses' deal with a lot. If someone has a cast on their broken leg, it's quite clear to people that they're in pain because of this injury. If you have pain in your joints, muscles and nerves, people can't see the problem and therefore don't think you look ill. If I have makeup on people assume you're perfectly healthy - I don't want to look ill, and I'm sorry if you think makeup equates to being fine. If I can't attend an event and someone sees me, they will ask why I can't go because "you look fine". Your appearance has nothing to do with whether you're ill or in pain, so these assumptions can really hurt. 

Being Young And Ill

I have a wheelchair that was given to me by my Auntie to help when things get really bad. Often I'm in pain the day after an event, such as charity walks, taking blog photos, going shopping or lifting heavy objects. Although I've only been in the wheelchair roughly 4 times since I got it last year, I get a lot of stares from people because I'm young and in a wheelchair. People will assume I'm paraplegic so when I get out of the chair there are dirty looks. I've had the comment about it being a shame that I'm so young but I'm ill like an elderly person. I can't change any of these things, so yes, I'm 23 and chronically ill.

Packing Extra Things For Trips

Going on a trip, whether it's a little hotel break or just a day out requires packing things to help me out. Most of the time I need a spare pair of shoes, usually the memory foam Skechers I have that makes it feel like you're walking on cushions. I need to pack wrist supports in case they start hurting. I have to write a checklist to remember medications and a pillow for longer car rides. I can't do spontaneous trips not only down to anxiety but also having to make sure I have everything.

Not Getting Better

What some people don't understand about chronic illnesses is what the word 'chronic' means. A chronic condition or disease is persistent and long-lasting. They cannot be prevented by vaccines or cured by medication. I have three chronic illnesses: Asthma, which is a chronic respiratory condition, and two chronic pain conditions, Fibromyalgia and Ehlers-Danlos Syndrome. They are managed by medications but cannot be cured so I take offence when people say I'll hopefully get better soon. I appreciate the sentiment but I'd rather people say that their thoughts are with me or that they hope I feel a little better.

Sensitivity To Uncontrollable Things

This is a hard one for some to understand. I'm more sensitive to light, sound and temperature and it drives me mad. If you show your phone to me on full brightness it can trigger a migraine and it will be a completely innocent mistake. If you blast your music or shout close to me it can trigger a migraine. If I'm in the car I need to keep sunglasses with me as the sun can pop out of nowhere are it will hurt my eyes.

Opinions Of Sorts

A lot of things change depending on what condition/s you have. Pain management may be in the form of physiotherapy or it might be medications. How much you can move, how much energy you have, what extra items you may use as aids depend along with many other things. No matter what condition you have, most spoonies have the opinion that every person matters despite them, although I have come across the odd person who measures value depending on your condition. We're all people at the end of the day, and this is one thing we face daily. People will always 'have an answer' or compare your condition to someone else. I've actually had the 'think of the people in Africa with no food or water' which has nothing to do with being chronically ill. I think there is a clash depending on whether you're registered as a disabled person or not too. There is such a spectrum when it comes to chronic illness so it doesn't surprise me when there are varied opinions.

What Other Spoonies Think:

@ellexmay "Being asked how can I be so tired because I haven't done anything"

@findingmygay "Getting called a hypochondriac. Using illness as an excuse. Friends making plans knowing you can't do things and expecting you to keep up"

@dreamsglitterxo "A lack of understanding or empathy"

@wonderlandblogs "I'm not too young or too pretty to be chronically ill. Illness doesn't discriminate. It also takes various forms, and people may have the same condition but be affected very differently. Never assume, judge or compete"

@beckieeschle "Feeling awkward for asking to sit down because it's an invisible illness and nobody can see that you need to sit down. Being told exercise will make it better and to just push myself. Getting told that you're so lucky to lie in bed all day"

@neesharees "I'm in permanent pain and when I say no to doing certain things, people try to coax me to do it because I look fine. If I hear one more person suggest doing yoga I will punch them in the face"

@wilson16jade "Having panic attacks at work and being told not to cry because it's all in my head"

@curlysuereview "That a chronic illness is life-long and I won't feel better tomorrow, next week or next year. People lose patience when caring and they wonder why you're not magically better"

@shambiwolf  "Treating you the same as non-ill people and holding you to the same standards can be difficult. I was ill and was told to quit uni or hold it off until I got better. I was asked to leave my internship due to my health and received every PC excuse they could muster which affected my mental health"

@rosettaxoblog "Being challenged for using the disabled toilet even though I had a radar key"

@eleanormaem "People give up on you"

@wildonesweare "People don't realise that medication doesn't always help or doesn't magically stop you feeling shit and having symptoms. When you're being made to feel like you're using your illness or making it up. Having a work newsletter that asked people to stop being poorly as it affects patient care"

@betternotstop "I get super exhausted every day and have to remind people often that the pain is ALWAYS there"

It seems like the biggest issue brought up by other spoonies is what other people think and their actions. We get on with being in pain and we don't mention it every single time because for some the pain is every minute of the day. The prejudice from able people and negative actions that they take seems to be the problem, hence why I've written this post. I'd love to hear more thoughts in the comments section about what your main issues tend to be or some advice you'd give to help others.