This post is by Heather Gaskill of whereapy.
There are so many things that most of us take for granted, and one of the most basic is our health.
Particularly when we’re young, the thought never really occurs to us that one day we’ll wake up with a set of symptoms that prevent us from performing the basic activities that carry us through life, those that the people around us can do relatively effortlessly.
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Just the experience of getting really sick is terrifying and traumatic; the feeling that your body is attacking itself for no apparent reason is bad enough, but being told that the condition is permanent is something else altogether. It’s like waking up in an awful new environment and being told “you live here now.”
If I could use one word to describe my experience of chronic illness, it would be “struggle.” I’d love to say that now, five years after having been diagnosed with Crohn’s, a form of inflammatory bowel disease, I had achieved “peace” with the situation, “accepted” it, as I’ve been advised to do, or found some great deeper meaning from it that made me appreciate the experience.
Don’t get me wrong—I feel like I’ve grown and learned things that would have been otherwise out of reach for me, and feel proud of how I’ve coped with and responded to my disease. However, if I was standing at a crossroads, and one path said “Crohn’s,” I’d take the other path.
The real rub of being sick for me has been figuring out how to cope after having found myself here, on the path that I would never have chosen. Initial diagnosis, given that it often follows a health crisis and many intrusive (and with bowel disease, very unpleasant and embarrassing) diagnostic tests, gets a lot of attention, but it’s really just the beginning of the story.
For me, the mental and emotional aspects of chronic illness have matched the difficulty of the physical ones. It’s hard to get your head around the idea that you may never have the energy to do the things you could before you got sick, that you may just keep getting worse until surgery is the only option, and that the treatments offered to you carry potential side effects that rival the disease itself.
Chronic illness can feel so lonely and isolating, as we’re often surrounded with people who are sympathetic, but have no real concept of what the experience might be like.
Things that I’ve found helpful on the road so far…
1. Support
I’ve found that I need just as much now as I did when I was diagnosed. Please ignore anyone who responds to you in a way that communicates that you should be “over this” by now. I’ve found working with a therapist at different points along the way to be really helpful. A lot of conditions have support groups, forums on the internet, etc.—figure out what works for you and use it.
2. Information
Most of us start with what our doctors tell us about our condition, available treatments, and prognosis. What I’ve found is that there’s a lot more out there about my disease than I’ve been told by my physicians. Sorting through all of it can feel confusing and overwhelming, but the more you know about what others have experienced, possible alternative treatments, and ways to cope, the better equipped you’ll be for my third suggestion, which is….
3. An empowered approach to treatment
When I first got sick I did pretty much everything my doctors told me to do: often the options sounded awful and counterintuitive to me, but I was really scared, and they always threatened surgery or worse if I didn’t take their advice, leaving me feeling helpless, trapped, and out of control.
After a lot of research and trying many different things, I’ve arrived at an approach to managing my illness that I’m comfortable with. I’m aware that things could change causing me to have to refigure things, but at this point I feel equipped to make informed decisions that incorporate several therapeutic approaches, including the conventional system.
You’re the only one who can decide what approach is the best for you; having support and information are really key pieces in being able to carry this suggestion out.
Heather Gaskill has a Masters degree in Social Work and has worked as a trauma therapist, educator, researcher and hospital social worker. She is the content editor for Whereapy, a website that builds relationships between people seeking therapy and independent therapists.
About Guest Contributor
Heather –
Thank you – on behalf of all us “chronic disease/disorder sufferers” for posting this informative and hope-inspiring article. There are two specific points that you made which I would reiterate for anyone who is struggling with chronic illness – and even more so for those who want to support them.
The first is that even years – or decades – after the initial diagnosis and many rounds of differing treatments, the afflicted person needs just as much, if not MORE support, than in the beginning. So true! Yet, oftentimes, our family and friends are “burnt out” and tired of hearing us even talk calmly – let alone cry and whine in pain – about our condition and the way it truly does determine the everyday quality of our lives. I applaud your suggestions for seeking formal support groups – online and off – and would only add this: seek to make new friends, whether similarly ill or not – who have the compassion and patience to be with you when you most need it – and limit your interactions with those who don’t “get it” about your condition. If you and/or your doctors both have tried to explain to your family and friends – assumed network of support – and they still don’t respond appropriately – accept that they can’t be your “go-to” people for support; and find some others who can. This can be really upsetting when it includes your spouse, parents, children and others you had previously thought would “always” be there for you. So, you need to grieve the loss of the positive relationships you thought you had, and then move on to finding ones that really match your needs – where you are today.
Secondly, I want to commend you for pointing our what we supposedly all know today; but don’t all practice. Doctors are not gods. And they are definitely not omniscient or infallible! They are, at best, well-educated and experienced professionals attempting to provide YOU – the patient – a service with their knowledge and tools. Modern medicine is to be practiced as a partnership between the practitioner and the patient/client in ALL fields. So, Heather, you are absolutely correct – do your own research, ask for opinions/suggestions that are “out-of-the-box”, and try experimental and/or “alternative”, options – IF they feel comfortable and right to you – but do at least inform your primary physician; even if they don’t approve, they still need to know about it and to add it to your medical record.
Fifteen years after being diagnosed with Fibromyalgia, and most all of its co-morbid subset of related conditions – including IBS – Heather, I hear you ( !:( ) – I still find every single day to be somewhat of a struggle. Certainly, some days are much better, some days are much worse. Some days I have energy and function very well, some days – my illness wins. And for me, and many others with chronic diseases/disorders, exactly what kind of day it will be – or turn into depending on circumstances – is almost impossible to know until it gets here. Which leaves us with uncertainty and that itself presents other, unique challenges that the “healthy” among us – especially the young and healthy – just do not understand; most of the time. Thankfully, there are exceptions. Find those exceptions, make them part of your social circle, and enjoy each moment that you feel good – in that moment.
I wish you the best, Heather – and again, I appreciate so much your contribution to public education on how to Feel Good!
Denise
Better Response motivate to writ more and I love that article….
its hard to learn to live with the chronic illness, and at what point do we truly “recover”
thansk for the inspiration
yes! Its too much Hard to live with chronic illness
Hi David: I’ve enjoyed your ponitsgs on SMTD and ASDAH, and I’m so glad I followed your post today to this blog. I enjoy your writing so much so real, so true. You’ve even inspired me to get an account here on WordPress, something i’ve never done before. I’m hoping you can offer advice about how to subscribe to your blog. I have a few sites i’ve subscribed to on My Yahoo, but don’t recall how i did so. Any suggestions?Maggie in VT
Yes Its very hard to live with chronic illness…
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