You think I would be used to it by now the subtle eye rolls, the exchanged looks of ‘here we go again’ and the deep sighs of ‘what is wrong now’ falling out of people’s lips. The sad thing is I am used to it, but it doesn’t make it hurt any less. I don’t expect anything less from strangers, people who don’t know me or my life, to look and make such gestures confused at what it is that is wrong with me exactly. I look ‘normal’ after all. Is it annoying? Yes, but does it surprise me? Not anymore sadly it is part and parcel of living with invisible chronic illnesses. It’s the people who do know me that react like that which are the real stingers; my family and friends.

How do you describe chronic illness to someone who doesn’t have one? You can give it a good go if needed, but ultimately its just words if you don’t experience it yourself. Throw in multiple chronic illnesses and it gets even more complicated as people start to suspect you may be some kind of hypochondriac as why it is always you that has to have everything wrong. I didn’t choose to get ill, yet I am and if not having to deal with my own emotions regarding my situation wasn’t enough I have to deal with everyone else’s too.

As much as I have struggled with the changes in my life over the years, it has been difficult for other people in my life too. Gone are the days of the workaholic professional in a well-paid job who back in my university days could be out for hours on end and not bat an eyelid. Now I am doing well if I manage to leave my house once every few days for a bit of fresh air. I have seen the changes in my life and in me as a person, so why wouldn’t anyone else notice it too?

One of the hardest things about being chronically ill – symptoms aside – is the disappointment I feel in other people around me. They don’t show it on purpose to make me feel bad, in fact I am not sure they realise they are even showing it at all, but I can feel it. The disappointment I am not the same person anymore that my life isn’t going in the direction it once was. I had such big goals in life and now my biggest achievement is having a shower every few days. I have learnt through my understanding of chronic illness that my goals now are just as important as my goals were before, but it doesn’t mean they seem important to others. They are out working, doing housework, raising babies and here I am congratulating myself over the fact I have washed my hair.

The truth is I feel at times I have to press the mute button on how I feel about my chronic illnesses to pacify others. Because whilst they support me physically I feel I have to support them emotionally when it comes to my illnesses more so than myself. I pretend I am ok that the mind-numbing fatigue in my body is not too bad, that the dizziness in my head will pass and the thumping headache will subside. Why you ask would I do that? Because if fighting the symptoms of chronic illness daily has taught me anything it is I so much stronger than anyone could imagine.

Seeing the sadness of others about my situation and at times their annoyance can stir up a mixture of emotions inside of me. Sometimes it is anger that they cant be more understanding, other times embarrassment that at the age of 32 I am still living the way I am and am so dependant on others, and on occasions hurt because I feel if the people who know me best don’t understand me then how can I get others who don’t know me at all to.

My feelings aside it has never really dawned on me however how it must be loving someone who has chronic illness. Loving someone and watching them live life with so many limitations. Whether that be your daughter, son, mother, father, brother, sister, friend or spouse, the person or people on the other side of the coin are suffering too. They don’t have a quick fix to make everything better so all they can do is be there, watch and support. They might not get it right sometimes, but do any of us? Because in the same way chronic illness patients may filter what they say to protect their loved ones, their loved ones probably do the same back.

Chronic illness doesn’t just affect me, sure I am living with the symptoms and the limitations, but it affects my friends and family too. It robs us all. It is natural whichever side of the illness you lay on to experience a cauldron of emotions in relation to the situation; it doesn’t make anyone bad people. We are all dealing with the beast that is chronic illness one way or another, so it is about becoming more understanding to each other’s needs.

Talk and listen, be honest and be considerate. Don’t take it to heart if sometimes you hear things don’t want to hear because sometimes you may say things too that are hard for others to digest. Even though talking is important so is having fun together and making time for each other that isn’t just about chronic illness. You are not your illness so it’s important at times to remind others of that too.

Remember you are not problem, your family and friends are not the problem. Chronic illness is the problem and with your loved ones by your side you can face it together and become stronger than ever before.

PLEASE NOTE – If talking to your loved ones is too hard and not an option then the use of support groups are fundamental and a great tool in hearing about other people in the same boat. This includes family, friends and carers as well as sufferers themselves. Don’t suffer alone – there are more people out there then you realise.