I’m currently working on a longer blog about another topic, but today on Facebook I saw that a friend of mine has been diagnosed with fibromyalgia after years of battling symptoms, having a previous CFS diagnosis, and basically trying to find answers to why she is always in so much pain and fatigued. Don’t we all know how that feels?!
The thing that struck me though, in reading all the comments from her Facebook friends, was how much a diagnosis like CFS or fibromyalgia brings along with it the many well-meaning suggestions of what treatment we should try. It’s such an overwhelming part of the whole illness journey that I don’t think non-ill people really get. Well, how could they really? When you’re not walking in someone else’s shoes it’s always hard to truly get what they are experiencing. They just think they’re being helpful – and don’t we all like to feel helpful to our loved ones?
In 21 years of CFS diagnosis (plus years before that of various symptoms), I have been bombarded with suggestions of treatments I should try. And quite frankly, I’ve tried most of them!! But at times it really has been overwhelming. What’s the overwhelming part? The fact that each of these people truly think THEY have the answer to your illness problem. THEY or someone they know have had success with the treatment, so for them it is absolutely the truth that you, too, will get well if you try it.
But that’s the overwhelming bit. What if you don’t try it? What if, for whatever reason – monetary, distance, energy, “just-don’t-wanna” – you choose NOT to try the suggested treatment someone is insisting you HAVE to try? Suddenly you get the sense that you are doing something wrong or offending the person if you don’t try it, or worse, you get the impression (sometimes quite rightly I think) that the person then believes “you obviously just don’t want to get well” if you don’t try it (I’ve actually had people say those exact words to me).
So, to add to all the other emotions, particularly confusion and grief, we can find ourselves feeling guilt. Guilt! Just because we don’t try, at this minute, the treatment being recommended to us. My friend on Facebook has had about five suggestions of treatments already in just a few hours. She has already defended her choice, at this stage, not to try one treatment another caring, well-meaning friend was practically begging her to try (her reasoning for not trying it just yet was how much it cost).
I used to get to the point where I wanted to roll my eyes every time I heard someone start a “have you tried …” spiel (and I may have actually done the eye-rolling at times too in my early days!). I know I definitely used to shut off and listen as if I was listening to white noise. It sounds rude, but I just couldn’t cope with the constant barrage of well-meaning people toting ‘cures’, when I’d tried so many of them and had no success.
But as time went by, and maturity came with it, I realised that all these people who were suggesting a possible ‘cure’ or treatment for my CFS were actually just showing me that they cared enough to want to help me. They, often feeling totally helpless and powerless, were excited to have something they could share with me that gave them a sense of being useful and empowered. Most of them didn’t know how many things I’d already tried, how much money I’d already spent, and how many times I’d gone through the dreaded hope-disappointment cycle. They just cared.
So I learned to just allow them to contribute to me and take their advice or suggestions on, just as I’d take on a tip of how to get stains out of my carpet – I’d listen respectfully, ask questions if I wanted to clarify anything, and accept their contribution to me, filing the information for a later time. I would also tell them that I was working on a treatment or two right now, and, as I always believed it was wise to allow each individual treatment time to work before trying another, that I’d put their suggestion in my ‘resource’ box and check it out for future reference.
These days I say, “Thanks, I’ll check it out when I get a chance. It sounds interesting”. OR, if it’s more appropriate, “Thanks. I have tried that before, but not with that particular person, so if I decide to try it again, I’ll look them up”. Something like that anyway! That way the person feels validated and I don’t feel any sense of having let them down.
It can be such a confusing, overwhelming time when first diagnosed with any illness, and even as time goes by, with illnesses such as CFS and fibromyalgia, with no clear cure, we are prime targets for every legitimate and non-legitimate health ‘treatment’ possible. I used to have a personal rule that if I heard about something or someone three times I had to at least try it/them. That rule’s worked pretty well for me.
I also have a personal rule that if I’m going to try something I, firstly, have to be in the right mind-set to do so. The hope-disappointment cycle can lead to a great deal of resignation on ever finding an answer to these mysterious illnesses. If I’m in the resigned/disappointment phase of that cycle I know I sometimes just need a break from any particular treatments or diets or whatever. Sometimes I have to allow myself the “I give up” phase, eat all the non-healthy things, do all the non-health-boosting things, get them out of my system and then get to the “I’m just so sick of feeling this way” phase before I can consider trying another treatment.
And I have always tried to give any treatment/health professional at least six months (three minimum) to show results before giving up. This means that I have to know I have the frame of mind that is ready for that commitment. I have to be in the frame of mind where I am psychologically and physically committed to following through on whatever the treatment requires of me (whether it’s 2-hourly homeopathic pillules, 3 x daily doses of 20 vitamin pills, daily physical exercises of some sort, a certain strict diet etc etc). If I’m NOT up to that level of commitment I may as well throw my money down the toilet (rarely do these treatments come for free!) and my hope with it.
The advice I gave my friend on Facebook (yes, I piped in too), was to look at all the options, but to always stay true to what she feels is best for her. “Go with your gut” in other words. Get all the information, weigh all the issues up (how much it costs, how much effort it requires, how much travel it requires and so on), look at where you’re at mentally (are you up for trying yet another treatment just now?), and then make a committed choice.
Don’t let other people ever make you feel guilty for not trying something they are recommending. That’s their stuff. Yes, they really care. Yes, they really believe in what they are touting. But if they really, really care about YOU, they will respect your personal journey, respect and trust you to make the decision that is right for you, and they will support you no matter what.
I saw a great quote from Jada Pinkett Smith the other day, who is fast becoming someone I greatly admire after coming across her Facebook page via someone else. As part of a longer post she said these words: “we are all our own universe where we experience realities that are not always understood by others”.
Our journey with CFS or fibromyalgia is very personal, and just like the illness, very idiosyncratic. There are thousands of treatments out there, and I have never given up hope that one of them will work for me (see my many references to my pyroluria diagnosis a year ago), but we always have to be true to ourselves and listen to our own inner wisdom, and then take the steps consistent with that.
No matter how much we respect or love the person giving us treatment suggestions, it is our body, our mind, our journey, and WE are the only ones who can make the choices we make. Some may not be productive choices, and we have to live with that. And some may be very productive. But ultimately, we have to live with the results of our choices, so in order to stay true to ourselves, it’s important to not become overwhelmed by others’ passion and commitment to us in their desire to see us well.
Clearly, we all want to be well, but we still have to manage our day to day lives in our own ways, and choose treatments accordingly. Don’t become overwhelmed by the passion of others or the insinuation that you don’t want to be well.
My personal opinion is that everything happens for a reason – it’s the way I get through some of the tougher times – so whatever you choose will be exactly the right choice for you. Whatever you learn or gain from it will have some impact down the track … sometimes it just seems like a very long track! 🙂
Please pop over to my Facebook Page, comment below or let me know on Twitter how YOU handle the overwhelming array of treatments people suggest you try – or just what you think of this blog … or maybe just to say “Hi” 🙂