So for my first post, I thought I should address something which I think is close to the heart of many of us who are chronically ill.
That is, the fear of getting sicker.
Being afraid of illness is quite natural. Nobody likes to have the flu or a migraine. Have you ever noticed that when we are sick, it is as if our bodies cannot remember what it felt like to be healthy? But as soon as we are better again, our bodies forget what it was like to be sick. Our energy returns to us, our pain diminishes and we can function ‘normally’ again. Yet in our minds we remember enough to fear that bug that is going round, or the person next to us on the train who cannot stop sniffling. Having an aversion to being sick is a normal, adaptive behaviour to have as we learn from a young age, when our immune systems are less well-developed, that being sick is not much fun!
But when you are sick every day, that fear can become all-consuming. When I was at my worst, and before my diagnoses, I was terrified every day of getting sicker. I was already heavily dependent on those around me. I was also completely clueless as to what was wrong and so I did not know to do the self-help techniques that I turn to now.
Even now that I know to an extent what is wrong with me, I am still terrified every time a new symptom occurs. I start to panic that it might catapult me onto yet another overwhelming journey of pain and struggle for recovery. I am also afraid that the symptoms I do know about could deteriorate. It is perhaps an extreme analogy, but it is like living with a permanent sword of Damocles over your head. Although, unlike Damocles it is the curse of weakness rather than strength that has hung it there.
I wish I had some inspired, wise advice on the subject, but honestly I am still afraid most of the time. At my worst, the fear was an omnipresent, powerful force that took up most of my head-space. Now it has tempered to a daily niggle, but it is still there and I think it always will be. When I start to see myself going backwards it is difficult not to panic; to think “here we go again” and try to brace myself for the roller coaster that is potentially to come.
So far, I have bounced back relatively quickly. Pacing myself definitely helps to prevent a complete crash but it can only do so much. Unlike those who experience hypochondriasis, which can itself be a devastating condition, those who are chronically ill have already been diagnosed with one or more serious illnesses. It is difficult to calm the mind when your worst fears are already manifesting themselves inside you. One thing I can say, though, is that if you are afraid I am there to listen to you. What has helped me the most is being able to voice my fears to people who understand and accept me, and for that I am deeply grateful. Receiving accurate medical advice on your condition is also important. Finding a doctor who is well-educated on your condition will help you to understand the prognosis and limitations that your condition may place on you, and the steps that you can take to live as healthily as possible. Another port of call is to contact charities whose aim is to help those with your condition, which are wonderful sources of information and support. For my own conditions I have been in contact with STARS (Syncope Trust and Reflex Anoxic Seizures) and HMSA (Hypermobility Syndromes Association). You can find them at www.stars.org.uk and hypermobility.org.
And remember, Dr Google is not your friend!