Hello everybody, welcome to episode 176 of Optimal Living Advice, the podcast where we take any questions you might have about the many struggles of life and get them answered for you here on the show. Today's episode is on living without being defined by chronic illness.
I’m your host, certified life coach Greg Audino reminding you before we begin that if you have a question you would like help with on the show, we welcome you to email it to us at advice AT oldpodcast.com
Also wishing you the happiest of new years. I know most people are breathing a sigh of relief that 2020 is over, but I dare say it might’ve been just what we needed – jam packed with lessons about not taking things for granted, being mindful of our health, keeping relationships alive in unique ways, getting comfortable spending time alone, budgeting, the list goes on.
My friends, I’m really looking forward to answering the question we’ve received for today’s episode. We’re going to be hearing from a woman who does not have as much say in the matter as most of us do when it comes to creating the life that she wants for herself. You’ll understand once you hear the question. Still, she’s look for some tips on steps she can take to live happily with a chronic illness. Let’s if we can help her to not be too held down by this and be sure that she’s letting her whole identity get some air. Here’s her question…
QUESTION: “Hi Greg! I am 33 years old and I have lived with a chronic health condition known as Chronic Fatigue Syndrome or M.E for the last eight years of my life. It certainly is a huge part of my life and to be honest, I don’t really have much outside of it. It sadly robbed me of my relationship, financial independence, career and social life.
I have slowly noticed how I have let the condition consume me. Upon meeting new people – It is often the first thing I tell them about myself and I'd really like to stop doing this. Do you have any tips for me on how to stop letting it consume me, it's like it has become a part of my identity even though I know I am not ‘my illness'?”
Listen to Greg narrate this post on living life without being defined by chronic illness in Episode 176 of the podcast Optimal Living Advice.
Mind and Body
Ok, a big question here – certainly something we haven’t heard before on the show, yet a familiar clash between the related worlds of physical and mental health for those with chronic illnesses.
It should go without saying that mind and body go hand in hand and that those of us who do not suffer from chronic illnesses should pay just as much attention to the mental wellbeing as they do to the physical wellbeing of those who do. With that
being said, I’m very sorry for what this illness has taken from you and please keep that in mind going forward if I come off as a little blunt about what I feel it can give to you.
Chronic Fatigue Syndrome
Let’s start by briefly going over what Chronic Fatigue Syndrome AKA CFS AKA ME which stands for Myalgic Encephalomyelitis is. Try saying that five times fast. It’s pretty well summed up; it’s an illness in which those who have it suffer from strong and prolonged bouts of fatigue.
However (and maybe there are some exceptions), the fatigue is not remedied by sleep, so feelings of tiredness linger regardless of whether or not the people who have it are sleeping enough.
I believe it can also affect one’s ability to think clearly and concentrate as well as cause some physical pain, and needless to say all of this makes it extremely difficult to perform daily tasks and live life normally, as you can probably tell from our asker’s submission.
Listen to Melani's thoughts on overcoming a chronic illness in Episode 911 of the podcast Optimal Health Daily.
And personally, what troubles me most about it, is that it’s widely misunderstood and not recognized to nearly the same degree as other chronic illnesses in spite of it really being quite common. This is true not only in society at large, but unfortunately, even in the medical field which makes it hard for people with ME to find well-equipped insurers and even doctors.
I’d be lying if I said I know much more about it than what I’ve just listed, so if any of that was inaccurate, my apologies.
Your Thoughts on Your Chronic Illness
I’m going to give you an inside-out answer here. Let’s start with your mentality surrounding ME.
I really want to talk about why you’d like to stop disclosing this to new people right away. You’re not in trouble, I just want to know what’s underneath that. Is this a means of convincing yourself that’s a smaller part of your life than it actually is? Is it so people can get to know the real parts of you first? Is it a conversation you’ve just had so many times and are sick of having?
I ask because it could, not is, but could be the case that you’re wanting to speak less about it because you’re ashamed by it and want to hide that part of yourself. If that were the case, it should go without saying that that won’t help you cope any better. And to me, the degree to which you insist on hiding this is the key to keeping it all in check.
Listen to Vironika's thoughts on escaping from the prison of shame in Episode 858 of the podcast Optimal Relationships Daily.
I sometimes worry that the hope we all look for on shows like this becomes so seductive that people feel they can completely change anything they put their minds to. Is cognitive change, or the way we perceive things readily available to us?
Barring a severe mental disorder, yes. And luckily, that’s the important one.
But when it comes to a chronic illness that objectively affects the way we live our lives, or past events that you can’t change (on an individual or societal level), looking for an “undo” button can become an extraordinarily self-destructive pursuit.
It’s a much faster and sensible route to start with what you have in front of you, work with them and accept them.
Not Being Fully Defined by Chronic Illness
ME is going to consume your outer life to a degree. It just is. You know this better than I do; you’ve lived with it for 8 years. And I could see how part of you wants to keep a spark of hope alive that it doesn’t have to, but it is a part of you, and that’s ok.
Like you said, it’s not part of who you really are. It’s not part of your spiritual identity. But given the affect it has on your daily routine, it’s a big part nonetheless.
So how can it be celebrated? I think there are a lot of ways, and forgive me if you’ve tried these, but I think it’s important to stick with them and believe in the realistic benefits they can provide you with.
Chronic Illness: Social Support Groups, Community, and More
You talk about the various ways in which ME has taken from your community; your social circle. I’d imagine this sense of isolation is indeed the most challenging part, especially when many people don’t seem to even understand what’s going on.
Can you join support groups with other people living with ME or other other chronic illnesses?
Listen to Tammy's thoughts on the art of community building in Episode 1038 of the podcast Optimal Living Daily.
Can you make a mission out of educating people on ME so as to not only surround yourself with people that get it, but also raise awareness and help others with your condition to dodge discrimination and be taken seriously by doctors and insurance companies?
You’ve already started that by submitting this question. By simply initiating this conversation and looking for support, thousands of people are now more aware of the realities of this condition, even though I might’ve butchered them in my little description.
It can happen that easily. Imagine how impactful your life can be if you continue to look for ways to spread awareness. You’ll get a lot more accomplished than a lot of other people even if you do need more time to rest, I’ll tell you that for free.
Defined by Chronic Illness: The Big Picture
I’ll tread carefully here, but I also encourage you to not let preconceived notions or fears surrounding ME get in the way of your life too much.
I say tread carefully because obviously you need to take your safety into consideration in addition to the risks of worsening your symptoms, but don’t trick yourself into thinking that you can’t do the tasks you wish you could do, but with some modifications.
Exercise is a really good example. It could be kept to daily yoga, stretching and mobility exercises, or even classic strength training exercises performed while laying down.
Listen to Dr. Neal's thoughts on how to exercise with a chronic disease in Episode 855 of the podcast Optimal Living Daily.
And certainly, this will all be navigated best with the help of a doctor, which leads me to my last point.
I think it’ll really help instill a sense of control if you keep track of the big picture. I’d stick to one doctor and one therapist who can monitor you over long periods of time and, in conjunction with you, keep an ongoing log of what activities make symptoms better or worse, how tired you are at certain times, etc.
All of this will keep you within a tight community of people who are supportive and working with you to establish patterns. Needless to say, once patterns are established, you can plan rest accordingly and do whatever else you need to maximize the energy you have.
—
To the woman who sent this in, thank you so very much for being vulnerable and for continuing to fight your battle to the best of your ability. I’m sure it’s not easy to always maintain your courage, but I hope that this episode leaves you with some gusto and a reminder that you can live your life fully because of your illness, not in spite of it.
There’s a difference, and being mindful of that subtle difference in wording can go a long way in feeling less defined by chronic illness.
For everyone else, I appreciate you coming today and being part of the group that our asker has the privilege of educating and spreading awareness to. It was a pleasure being with you all today, and you know I’ll see you again in the next one.
Listen to Greg narrate this post on living life without being defined by chronic illness in Episode 176 of the podcast Optimal Living Advice.
