This is just a quick post as I am still recovering from my birthday celebrations just over a week ago. I have spent most of the last week sleeping and then this weekend I have suffered a horrific migraine, which left me limited to the amount of time I have been able to use a computer screen.
10 things I have learnt since becoming chronically sick
1. If a person wasn’t a nice person before getting sick the chances of them suddenly becoming a nice person once struck down by illness is remote. Nice people and horrible people get sick, it’s the way of the world. Becoming ill doesn’t change someones basic personality.
2. Just because you go out of your way to help someone who is also chronically sick doesn’t mean your efforts will ever be acknowledged. Since getting ill I have helped many people with things like getting a diagnosis, employment law issues and disability discrimination cases. 99% of the time the people I help are extremely grateful for the help I give them. However when you help someone and you get no acknowledgement of the time and effort you have spent it is a real kick in the teeth. This is especially true if the person is also chronically sick and knows how physically / mentally demanding its been for you to help them. It is very hurtful but it will not stop me helping others.
3. Don’t expect people to understand your illness. Even if the person suffers with the same condition as you, their symptoms and physical / mental limitations will be different to yours. People within the chronically sick world seem to forget this and will happily sit in judgement of others. I never expect people to understand my illness. Over the years I have conceded defeat on trying to get others to understand my illness because my own understanding of my condition is limited. As soon as doctors start talking about genetics, parasympathetic and sympathetic nervous systems I am lost. It is as if my brain will not accept the information. If I don’t understand what is going on with my own body I shouldn’t expect others too.
4. Don’t expect others to actually believe you are sick. This is a hard one to accept. When I first became ill I felt like I had to prove how sick I was to others, despite having a diagnosis and medical reports that proved I was ill. People who you have known for a very long time will either believe you or not. All that is important is that the people who love and care about you support you and know that you are ill. I have had many people suggest that I make my condition up, that I love being at home all day and not having to work. Nothing could be further from the truth. People will believe what they want to believe and there is nothing I can do or say that will make them think differently.
5. Choose your battles wisely. Again this one was a hard one to learn. Initially I felt I had to fight every battle, getting a diagnosis, getting people to understand my condition, making people believe me. The only thing that matters is your health and not whether or not someone who hasn’t seen you in years accepts that you are sick. Getting a diagnosis and treatment is the only battle you should be fighting. All energy initially should be reserved for this, the rest will sort itself out as you go along and you will accept that some people aren’t worth fighting. I wasted a lot of energy I didn’t have to spare when I first got sick on battles that really weren’t worth fighting.
6. You will lose “friends” when you get sick. This is one of the hardest things I have had to accept since getting sick is that people walk away. I had many people I was friendly with at work only one person has stuck by me since getting sick. People get bored, don’t know how to deal with illness or on a basic level lack compassion. I have written on this subject extensively in the past, so I won’t bore you with my thoughts on it again.
7. Some people will assume if you use a wheelchair that you are mentally deficient. It never ceases to amaze me that people see my wheelchair and automatically assume they should direct their questions about me to the person pushing it. Before I needed my wheelchair I never made those kind of assumptions about people who used them. For me this is a very backward view of disability which really needs to be challenged.
8. It is possible to be happy, even though your health is crap! This was an important lesson for me to learn. After a manically busy career in retail the thought staring at 4 walls all day everyday for the rest of my life at times made me feel suicidal when I first became ill. I realised early on I could cry all day everyday and rant at the world or I could take charge of my life and find things to do that made me feel fulfilled. It would have been very easy to decide to give up and become a negative, angry person. I decided that if I wanted to keep people in my life I had to lose the negativity. No one wants to be around a negative ball of rage 24/7. I had to find the simple joys in life, reading a good book – my free time had been severely limited before I became ill, becoming active in on-line communities, creative writing, blogging were all things I did to help me feel like I was contributing to the world and in turn gave me pleasure. Find things that you can do that give you back some control, a sense of accomplishment and pride. It can be anything you want it to be but don’t give in to negativity. I will be honest I don’t manage it 100% of the time but I never stop trying.
9. Some doctors are idiots. When I first became ill my attitude towards doctors was very positive, seven years down the line that is no longer the case. Some doctors like to pretend to their patients that they know everything, even though it’s not possible for one human being to know everything about medical science. What I really dislike about some doctors is their unwillingness to acknowledge that they don’t know the answer. Unfortunately I have met many doctors who believe that anything they can’t understand / diagnose means that the patient is suffering from a psychological issue rather than a physiological one. So many of us with Dysautonomia and Ehlers Danlos Syndrome have had a diagnosis of somatiform disorder rather than the correct diagnosis because a doctor was out of their depth and wouldn’t admit they lacked knowledge of these conditions. After all my own gp back in 2010 told me I couldn’t have EDS because it was too rare and Postural orthostatic tachycardia syndrome didn’t exist. Yet a year later I had a diagnosis of both, my gp was happy to label me with a mental health disorder rather than give me the tests I needed to prove what was wrong with me. Once you accept some doctors are idiots you are no longer disappointed or left disbelieving yourself.
10. Keep your sense of humour! I am extremely lucky that I grew up in a family that could find the humour in any situation, no matter how dark it was. Our gallows sense of humour isn’t always understood or appreciated. People don’t understand how my sister and I can be in absolute agony yet still be cracking jokes. It is our coping mechanism the people closest to us know that when we stop cracking jokes then that is the time to worry. Things can feel very dark when you first get sick by keeping your sense of humour and laughing in the face of adversity it can prevent you being absorbed by the horrible things that are happening to you. I have laughed / cracked jokes before intimate examinations – it’s always hilarious watching the medical staffs faces as they never know how to react! Our family also thrives on sarcasm and people often struggle to understand that we are being sarcastic not serious.
I could probably add many more and make it 20 or 30 things I have learnt and I am sure you can add your own suggestions to these.
As always thank you for reading.