When you have a chronic illness, you’ll inevitably hit a point where your mental health starts to suffer. No one likes to be limited by factors outside of their control, and living with ongoing health problems is the pinnacle of just that: a steady, uncompromising burden to which you relinquish autonomy. Of course, with certain conditions there are things you can do to minimize the disruption it causes to your day-to-day life; but when all is said and done, it’s still a weight that colours your existence in a significant way. And it’s nearly impossible to have that fact not take a toll on your mental wellbeing.
One aspect I continue to struggle with is making any sense of why I got sick in the first place, and for so long. I don’t get why, a month after starting my third year of university, I came down with a flu-like illness which left my memory significantly impaired (not to mention the other neuropsychiatric manifestations that developed later). It’s been 3.5 years since that occurrence and to say that it’s derailed my life plans, hopes for the future, and sense of self-worth would be an understatement.
I know, it’s dangerous thinking to let yourself be defined by your illness. But I’m stating, just for the record, that it plain sucks to have experienced my intellect and cognitive abilities, with which I used to identify so strongly, be stripped away so unexpectedly.
Okay, complaints aside. The tl;dr up until this point is that the seemingly arbitrary nature of being struck down with illness and suffering its consequences is that it’s easy to lose your footing and get lost in the senselessness of it all.
One remedy to this toxic train of thinking is to restore a sense of meaning in your life. I’ve found that sharing my story with others is a powerful way to do that, whether it be online or in-person. Connecting with others and helping them has always brought me personal fulfillment, and doing so via discussing (the sometimes ugly nature of) personal health is a natural extension of that. No matter who you might have in your life for support (friends, family, significant others), sometimes you just need to hear the words of someone who’s been standing in the same whacky place as you to feel truly comforted. And the experience of being that person for someone else gives back to you in a way that might not be obvious until you’ve had it.
In my experience, understanding that your words have the power to make someone feel less alone, more hopeful, and more motivated to strive for a better life removes the feeling of having a pointless existence and replaces it with a sense of meaning.
Just recently, my local family doctor (who writes my prescriptions in Canada following the recommendations of my American doctor; she’s very sympathetic of my situation, but rather clueless herself as to how to treat me) put me in touch with a patient of hers who has been struggling to find explanations for her symptoms through the Canadian healthcare system. Sharing my story with her was cathartic and like talking to a younger version of myself; suggesting ways for her to move forward with her health gave me a renewed sense of value in the knowledge I have to offer.
When it comes to sharing things online (which I’ve only done more recently), I’ve drawn inspiration from the feeling I get when I read words written by others that hit close to home. I used to lurk in the background, scouring message boards and blogs to find others with similar experiences and to find out what they’ve tried. One of my favourite resources is the Phoenix Rising forum, a place for those with ME/chronic fatigue syndrome and other related illnesses. Contributing to the conversation over there every now and then, together with writing this blog, has been encouraging both for the positive personal interactions as well as the comments that let me know that my words have resonated with others.
Some final thoughts:
- Internalizing that your existence is meaningful to others is helpful when you’re struggling with your mental health, particularly when your mind is (falsely) telling you that everything about your existence is pointless. In that state, sometimes you need to look beyond yourself to find a reason to keep going, and that’s okay.
- No matter how alone you feel, with 7 billion plus people in the world it’s guaranteed that someone right now is feeling similar to you, and that someone in the future will feel similar to you. Work on getting your story out there (share it in person if you have the opportunity, or post something online). Your personal experience will resonate with someone, meaning more to them than what it might mean to you in the present moment.
Thank you to everyone I’ve interacted with in this journey so far. You’ve helped bring meaning to my life, and because of that I am inspired to keep blogging and documenting my experiences!
I’m glad the message of the post resonated with you! I agree that finding your ‘tribe’ is also a good strategy to keep up your mental health. Thank goodness for the existence of the internet these days and for what it is able to facilitate!
I’m having a really tough day starting my 5th year with chronic illness, and this post nearly brought me to tears for about the fourth time today. I feel like this could have been written about me! Thank you for helping me feel a little less alone xx
That’s tough! I’m into my 3rd year of chronic illness and I am finally starting to internalize that I can’t just wait “until I’m cured” to start enjoying life. Life continues to pass by, and I can’t keep pinning my hopes on the generalized notion of a “better tomorrow” because there’s a high chance the future may not turn out the way I envision. You’re never alone;sSending you positive vibes xoxo
Thank you for sharing this. I was a long term sufferer of mental illness before my recent diagnosis of Fibromyalgia. It’s left me a bit shaken to say the least and sometimes I feel like I’ll never find my footing. But joining online support groups and reading posts like this are amazingly helpful. I’m not alone. I’m not useless. I’m just a bit different to what I used to be. Thank you for reminding me.
I’m glad that my words resonated with you! I get where you’re coming from and believe me I’ve been there before, as far as feeling like I’ll never find my footing. But I believe I’m slowly getting to a much better place mentally, and remembering that I’m not alone has been a huge part in the healing process. It’s been wonderful to connect with everyone that I have online!
You brought up so many good points. Mental and physical health are so intertwined and I’m glad you brought attention to that. We need to talk about these things more!
Thanks for stopping by and reading my post! I agree that both mental and physical health are closely linked. It’s hard to keep one intact when the other starts declining. Also thanks for the follow and I look forward to reading your posts! 🙂
Reblogged this on How I Live Now: Life With ALS and commented:
This beautiful writer hits on one of the greatest points of pain for people with ALS. We’re all wondering why this mysterious disease with no known cause or cure chose us. Every day, I think, “Why me?” Read on to learn the exact reason I write and how sharing your own story can improve your mental health.
I really connected with your post. As someone who has had Fibromyalgia, Psoriasis (and the psoriatic arthritis that comes with that “package deal”) and now Hypothyroidism, sometimes I feel like a walking bunch of random symptoms and vagueness that defines my life sometimes. Talking about it is SO cathartic and connecting with others who *get it* is so vital. I look forward to reading more from you and thanks for visiting me!
Thank you for reading my post! It always makes my day to get feedback like yours and to know that my words are positively impacting others. I can empathize with the feeling of having mysterious symptoms arise and then disappear for awhile, and the uncertainty that causes within yourself. I’m glad that you have found an outlet for your thoughts that works for you 🙂
Thank you so much for sharing your story here on your blog. And while this entire post was enlightening, your final thought #2 touched my heart. To say that “finding the positive can be a challenge” is an understatement. And we all know it is not easy. But you are proof-positive that it is possible. And I know that you are touching people in ways they never thought possible. Again, all I can say is “Thank You” and please keep putting the one proverbial foot in front of the other. Because, even though sometimes it may not feel that way to you, I truly do believe you are making a difference.
Your words have really touched me; thank you for your encouragement and kindness! With all of life’s challenges (illness or not) it’s easy to feel lost, but I truly believe that connecting with others is helping me to find my footing. Turning towards others rather than away has made a real difference in my life, and it’s my goal to spread that sense of wellbeing I’ve gained to as many people as I can!
I really like this. Thank you. Wishing you well in your struggle with chronic illness. Glad to know I’m not alone as a young person with chronic illness. Much love! 🙂
Happy to hear your feedback :). You’re definitely not alone; amidst everything I hope you’re dealing as well as possible <3
Thank you so much for this, it was exactly what I needed today. Wishing you all good things.
I appreciate you stopping by! All the best to you as well.
I also shared your inspirational words with my Patients Like Me family with the following comment:
“Sharing your personal experiences can truly make a difference in someone else’s world, it certainly gives a sense of meaning to my life. Someday this pain will be useful… ”
Here is my story:
Hi Kris thank you so much for sharing my post. I’m glad to hear that you too have found meaning through sharing your experiences. I wish you well on your journey!
I developed chronic fatigue after being for 2 years on heavy meds which I simply have to take. Medications can cause a lot of problems, including systemic issues, disbalance, not to metion any other bad side-effects. I find the health care in Canada not that good. They totally screwed up my surgery 2 years ago and I need to have now one more surgery to fix the previous complications. I am originally from Europe, I would say the treatment and treatment options are much better there. It is first of all more knowledgeable specialists who will think out of the box to find a unique treatment the patient needs. I find that it goes here by average and mainstream assumptions. Nobody wants to listen to patient. Thankfully, I have lots of medical experience, so, I can manage all my conditions somewhat.
Your case sounds hopeful.
Do not treat yourself based on advice you get in forums. Instead, you should seek other opinion from somebody experienced and have your medical history ready, as well as testing done. Sometimes it can be some deviation and that goes long ways. People will advice you anything but you should know what is or what was causing your fatigue. There is always a cause and that is the best way to figure out what exactly you require to treat your problem. It is hard to give anybody any advice by not knowing what they’ve been tested for, what readings were, what are the vitals, blood tests, biochemistry so on and so forth. It also depends on family history, place of birth and general epigenetic factors. It sounds like you are young, so, this is something from which you will recover completely.
I really appreciate you taking the time to comment. Wow, I’m sorry to hear that you had to go through all that and even had a botched surgery that needed to be rectified.
That’s an interesting perspective you have on the Canadian healthcare system, and it is similar to the one that I have developed after my own experiences here. I think many people here are used to giving their 100% trust to their doctors, whereas really they are just normal people who tend to blend into the medical culture they have been exposed to in North America. I have learned over the past few years that we really need to do our own research and be our own advocates in the healthcare system here.
I have read lots of forums simply because doctors in Canada could not give me any answers, and I needed other ideas for avenues of investigation. Thankfully I am now under the care of a great complex chronic illness doctor in California who has done an extensive history and set of medical tests on me. We believe that I have been infected by bacteria likely transmitted by a tick, which has now caused an autoimmune reaction in me. This is backed up by testing for tickborne illness and markers of autoantibodies. So far, the American medical care I am receiving seems to be healing me.
I appreciate your input and encouragement, and hope you are doing well. All the best!
So sorry for your suffering and sending you healing thoughts.
I appreciate them a lot <3
Love it! Keep posting
Of course 🙂