This morning, my mum and I were talking about people’s perceptions of you when you have a chronic health problem. I know that I have touched on this before, but when you are living with an ongoing issue, it is tough enough without having to deal with people’s misconceptions and judgements. We came to the conclusion that no one can really understand the situation unless they actually live through it, or are very close to someone living with it. Mum is the closest person to me in this process, and she even admits to sometimes not understanding, but she truly gets the roller coaster, the hard times, and the frustrations.
The most difficult thing I find that people don’t understand, is that some days I can push through, and others I can’t. I am one of the lucky ones. Some people with chronic fatigue, pain and fainting issues are in bed all day, every day, and basic things become mammoth tasks. Yes, I can sometimes have a couple of hours where I can put on a brave face, smile, and have fun, or do gentle chores. But what some people don’t see, or don’t choose to acknowledge, is that the process of getting myself ready, out of the house and to that point was a huge effort. They also do not see that during those smiles I am often feeling bad, and afterwards, I rest on the couch or in bed for hours or days. Sometimes, I do have to cancel plans, because I just feel too bad that there is no pushing through. But on days I can manage to push through, and hide my paleness and dark eyes with makeup, I don’t miraculously feel 100%! Maybe that is part of the problem, because I do not voice and make known the invisible symptoms to people around me, or I will say that I am feeling better than I actually am. But I don’t want to be “that sick girl who is always complaining”!
Some days I get exhausted just having a shower, or even eating a meal can have me feeling like I ran a marathon! Racing heart, dizziness, exhaustion, nausea, sweating…just from eating a light meal! But those are things that unless you really know me, you won’t notice too much. I guess it was more obvious when I was pushing through to go to work, do groceries, do house work, drive, exercise, cook dinner and try to socialise as well. There would be days I would look so obviously unwell that my colleagues would take one look at me and send me home. Now, I have got to a point with my health where I no longer force myself to struggle my way through work, and my parents help me with chores and cooking, so I have more strength in reserve. People who judge my ability to appear “healthy”, helped by make up and a smile, don’t take into account the fact that I haven’t been able to do normal everyday chores as well as get to that point in the day. They also don’t see that when I am trying to join in and make the most of the situation, I may be pressing my nails hard into my palms trying to force away the light headed, faint feeling that takes over my vision and concentration, or I may be sitting down because of the overwhelming muscle and joint pain. I have been dealing with this body for a long time; I am good at hiding my symptoms! If you can actually see that I am unwell, then I am really having a bad day!
What I am coming to is that if you are on the outside of someone who is living like this, please think before you judge. You do not know the full story, unless you really ask and delve into their life. If you are living through this, don’t feel alone, and don’t let others make you feel like it is all in your head. I know from years of going from doctor to doctor seeking an answer, that it feels terrible to not be understood. And then when the answers do start to come through, to find that people close to you still don’t comprehend that you are unwell is mind-blowingly frustrating and disappointing. But don’t give up. We need to educate people, without sounding like whingers, and let people understand what it is like. Every person is just one moment away from living with a chronic illness; anyone could end up experiencing this, so no one should discount you or belittle you. It is real, and if you can put on such a brave and happy face that people doubt you, then you are strong and fabulous.