By Jennifer Cook
Having a complex, chronic health condition is incredibly hard and immensely frustrating.
From the day that things start to go awry, to diagnosis (if you indeed ever get one) the journey is not unlike that of Atreyu from the Never-Ending Story. You spend an inordinate amount of time and energy fighting the “Nothing”. You lose loved ones on the way, either physically, mentally or emotionally.
Not everyone knows how to help, not everyone can cope with the decades of unexplained and unreasoned pain, fatigue, and inability to be like them. So, you as the centre of this world, become isolated, physically, mentally and emotionally. This is even more debilitating. It is also unfair. It is maddening. You want help, desperately need it, would do anything to get it – but have often no idea of how, where, and who can give it to you. And there is rarely anyone who will step forward and do the leg work for you.
In my own experience, which is now 25 years long, I can tell you that I wish there was a single website I could have gone to, to give me the answers I sought. Even if the answers were what I now know – that I have a rare undiagnosable autoimmune disease, that there is no cure, it is all about management now, food and lifestyle is two thirds of the answer, drugs can help but also be a huge case of trail and error, that getting a team of great therapists to help me is key to getting control, and that eventually, over a decade down the track, I would feel the quicksand under my feet firm, and I would finally be able to get serious traction in my health. “So, hold on Jen, you will be able to breathe soon”.
If I had known it would take over 10 years, would this have made the years easier or harder?
I can only answer that question for me. And for me, yes, I could take comfort in that, but that is who I am. I am a “do-er”. Buckle up your seat belt, tighten the boot laces, stick on bright red lippy, push up the sleeves and “let’s DO THIS” kinda person. But I am also a person who can fall over in a massive heap, anxiety ridden, depressed, hopeless and helpless and wanting to wake up when it is over. I am not interested in dying – I have to much I want to do and see, but I think the duality of this is very much part of the parcel when you have a complex chronic health condition.
One of the most rewarding creations to come from my 25 years’ experience is being a case manager at my own Health Clinic. This is my way of changing the headline, rewriting the trauma and giving Fred (the name I gave my condition) a very emphatic bird. During case management it is your experience and situation that we work with. I provide guidance, as you state what your goals are, advise what steps to take, what is available to you and how to get access to it. Then how to budget for the journey and I am not just talking money here. This is how to budget your energy, your time, your expectations, and your mental expenditure. Cause this is a long haul – a trip that takes planning, a support team, and constant readjustments as the horizon moves.
And you need to know that you can do it. You need someone to tell you it is possible – even by average people like us – we aren’t superheros, we aren’t born with extra abilities, and in fact our own genetics can work against us. But there is more we can do than we often know and often the changes are simple, elegant and cost very little.
But let us be clear, the investment you make in yourself is the best you can ever make in your life. There is no one more important than you. And only you can change you. You have the power, the expertise and understanding of yourself that can be utilised to help you. Asking for help from your case manager, being clear yourself about what you want, what you need, and creating an achievable plan, could be rope ladder you have been waiting for. It won’t be easy, there is much work to be done, but you will not be on your own and your story will have a ending where you get to ride on Falcor over the heads of the bullies who made life so awful. Well… something like that anyway. Beating the beast feels like that. Trust me, I know.
Jennifer Cook is Director of the Western Health Collective, Case Manager and host of Fred