Why I am Fed up of Making Sacrifices to be Well
It started with my decision to begin Humira a few weeks ago. Admittedly, I am a rare breed of Crohn's patient who tends to feel quite well even if inflammation is present. So my signing up was more about understanding the damage lingering inflammation can do rather than dealing my quite mild symptoms (Although, a girl can dream of being 100% symptom-free can't she?)
However, several weeks in and I'm battling fatigue, achy joints, brain fog and erratic moods. OK-hopefully these initial symptoms may subside, but when I talk to anyone about side effects, they simply explain it's all about 'weighing up the risks.'
In other words, you've got a chronic illness; so you should be grateful we're trying to fix you at all rather than moaning about the side effects.
We should expect to sacrifice your mental health, your fatigue, your concentration in the pursuit of a perfect bowel. Because that's all that matters here.
How is that fair?
Now I understand that we have to be realistic and all drugs have side effects (and I'm not for one minute suggesting they aren't hugely important). But my issue is more with how this conundrum is presented rather than the symptoms itself. As if we are always expected to give things up without hesitation.
Let's not forget that so many of us make multiple sacrifices elsewhere in our lives.
In my case, a change of career has been a positive one but others have had to change direction, take a pay cut or give up their jobs altogether.
There are mixed opinions about diet and IBD. In my case, diet helps a great deal but I've gotten to the point where I've become slightly resentful about this. When I first was diagnosed with IBD, it felt a given that I would, of course, make any sacrifice possible to feel better. I overhauled my diet, dealt with stress and it seemed a no-brainer that this is what I would have to do.
As the years have gone on, I've started to consider the impact the above has on my relationships and socializing. And whilst there's nothing more important than health, I need to acknowledge this as something again I'd had to sacrifice and that I need to balance my physical health with my mental health too. I've started to cut myself some slack for the sake of my sanity.
Because it's okay to still want to drink wine sometimes (if you want to) and not feel incredibly guilty about it. It's ok to take too much on sometimes and skip that yoga class or sleeping session. Or go one further and pretend that nothing is wrong with you and indulge in bad food choices for a day or two. Sometimes we need those 'blowouts'(although I hope I'm giving the impression of indulging in your favorite foods and drinks here- I'm not suggesting we drink ourselves into oblivion) to enjoy our lives. As somewhere along the way, this is something we tend to forget when living with an illness.
Where do we draw the line?
How many sacrifices have you made? And how many more are you willing to do? Is it irresponsible to sometimes sacrifice our physical health for our mental health and enjoyment of life? I'm not quite sure yet but I'd love to hear your thoughts!
Will you help us understand the impact of Crohn's & colitis by taking the IBD In America Survey (US only)?