Chronic illness probably isn’t something that you spend any time thinking about unless of course, you happen to have it.
Then if you are not careful, it can consume your life.
Chronic illness doesn’t just affect your body, it affects your mind, your emotions, your energy levels, your focus and concentration and limits what you can do without pain or exhausting yourself.
Over on my Facebook page, I share the emotional side of life with chronic illness to promote honest conversations of what life with chronic illness is really like so that others will have that wonderful and validating experience of being able to say “me too.”
I asked my community two questions:
What illness do you have and what do you most want people to understand about your chronic illness?
And they responded. Some wanted to give their names, some wanted to be anonymous. All were brave enough to speak their truth. Somewhere in here you may find that “me too” insight.
Here is what they said:
What chronic illnesses do you have?
Hashimoto’s Thyroiditis, PCOS, fluoroquinolone antibiotic poisoning, peripheral neuropathy, joint, muscle and tendon issues, degenerative disc issues.
What do you most want people to understand about your chronic illness?
How debilitating fatigue and brain fog really are. How much food affects us. How badly we are treated by doctors in the system that don’t understand how to treat these diseases. How long we struggle before getting proper diagnosis.
Anonymous
What chronic illnesses do you have?
Chronic Autoimmune Lyme Disease, IBD, Fibromyalgia, Chronic Fatigue Syndrome, Non-Epileptic Seizure Disorder, POTS, Celiacs Disease suspected.
What do you most want people to understand about your chronic illness?
My illness is the result of numerous co-factors, many of which are completely beyond my control. I am not sick because I don’t take care of myself. I am not sick because I make poor choices. I am not sick because I am weak. I am not sick because I in anyway deserve to be.
I am sick because illness is a part of life. Illness isn’t a failure, but a universal reality. Due to the current state of our planet (which is not well) it has become an increasingly common reality. Apart from my illness, I am just like anyone else. I didn’t ask for this or choose this.
We all experience illness. I happen to have experienced it longterm. All the more reason to show me longterm compassion. All the more reason to care for each other, ourselves, and our planet. We’re all in this together.
Kat Woods.
What chronic illnesses do you have?
Hashimoto’s Disease, adrenal insufficiency, multiple food and environmental allergies and possibly something else that hasn’t been diagnosed yet
What do you most want people to understand about your chronic illness?
That once you have a chronic disease, it’s usually there for the rest of your life. EVERY. DAY. Not just when it’s a convenient time to be tired or achy or sick, but always.
That for some people, nearly every day is a struggle, and that a few words of kindness, sympathy and support go a long way.
Anonymous
What chronic illnesses do you have?
Hashimoto’s disease, pernicious anaemia and Addisons disease, PTSD and chronic depression and anxiety
What do you most want people to understand about your chronic illness?
How terribly alone I feel every day, even those closest to me don’t realise the extent I suffer daily. Also how terribly exhausting it is putting on the ‘normal’ mask because people don’t realise that chronic disease means indefinite.
Natasha Horvath
What chronic illnesses do you have?
CFS, Hashimoto’s and adrenal fatigue
What do you most want people to understand about your chronic illness?
That sometimes I am committing not only to go to that event, or party or catch up. I’m also committing to the crash that might come afterwards and wipe weeks out of my life.
Freya
What chronic illnesses do you have?
Rheumatoid arthritis
What do you most want people to understand about your chronic illness?
That the pain is real and unpredictable; that I’m not lazy for needing to rest more; that my different diet (paleo/AIP/hypotoxic) is not a fad, but something I do to be healthier and feel better.
M. R.
What chronic illnesses do you have?
Ankylosing spondylitis. Hypothyroidism
What do you most want people to understand about your chronic illness?
Just because I don’t look sick or in pain doesn’t mean I’m not. When I don’t attend social functions it’s not personal. For you to think so is self absorbed and hurtful. I don’t need the emotional and verbal abuse from others to add to what is already a daily battle.
My fatigue is not the same as yours. When you ask how I’m doing, listen. Don’t answer with a story about yourself. That’s not listening. Take care of your own healthy body. Respect the gift you’ve been given. Learn from watching other people suffer with chronic illness.
I find it insulting to listen to “jokes” about your bad eating habits like “ya gotta die somehow.” And finally, the phrase “a little won’t hurt” or “everything in moderation” does not apply to people with autoimmune disorders. Yes, it actually will hurt, a lot.
J. W.
What chronic illnesses do you have?
Idiopathic Thrombocytopenia Purpura (ITP) – low platelets, bleeding disorder
It affects every aspect of my life, every day, all day. It impacts my activities, my happiness, my ability and willingness to do things due to fear of causing a problem. My anxiety related to this issue is extreme.
J. G.
What chronic illnesses do you have?
Chronic back pain (arthritis, bone spur, degenerated and herniated discs, hyper-mobility) I am age 36.
What do you most want people to understand about your chronic illness?
That it’s an emotional roller coaster and a listening ear and practical help is necessary to make it through each day. I’m unable to commit to things despite wanting to – please don’t take it personally. I feel helpless and often depressed.
Im not over exaggerating for attention. I have good days and bad days. Medicine doesn’t always help. It sometimes takes a full hour to force myself out of bed. The pain is overwhelming.
Emily Loveless.
What chronic illnesses do you have?
Rheumatoid arthritis, fibromyalgia.
What do you most want people to understand about your chronic illness?
My fatigue is real. I am not being lazy or in need of sleep. I’m doing my best.
R. M.
What chronic illnesses do you have?
Hashimoto’s Thyroiditis
What do you most want people to understand about your chronic illness?
My fat, anxiety, lack of energy, and poor focus are a result of my illness, not of bad character.
Anonymous
What chronic illnesses do you have?
Multiple Sclerosis
What do you most want people to understand about your chronic illness?
Symptoms of this disease can change day by day, and even moment by moment. Weather also has a HUGE effect on the severity of my symptoms. If the temperature is not perfect, my symptoms suddenly spike. Each day my every move has to be calculated, and I really can’t leave the house most days because of the sudden shock of summer weather and air conditioned houses/cars.
The things we normally take for granted are like climbing a mountain. Oh and FATIGUE….can not be understood or described unless you have an AI disease as well. Sorry to ramble. Love your work Kerry!
Jessica Orosco
What chronic illnesses do you have?
CFS; Fibromyalgia; Polycystic Kidney and Liver Disease; Costchondritis; Arthritis; Spinal Injury… and many more. LOL.
What do you most want people to understand about your chronic illness?
I want people to understand that those of us with Chronic Illness are not victims, we are not “sufferers”, we are SURVIVORS!
We are the brave, the ones who smile through our pain. Everyday we face a battle with our bodies, and everyday we are still here surviving (and some of us even thriving) in our lives against sometimes insurmountable odds.
Even though sometimes we may have to take some time out for ourselves to deal with our health issues, we are still capable of doing amazing things and living incredible lives.
Anonymous
What chronic illnesses do you have?
Adrenal fatigue, Hashimoto’s
What do you most want people to understand about your chronic illness?
It is nice when people know that it is real and that food matters. But really it doesn’t matter so much if anyone understands. As long as I understand what I need and make sure that I get that. Of course it’s important that your partner or the people you live with show some understanding. But in the end it is still about me and my boundaries.
When I became serious about my own well-being, when I started to take myself seriously, strange comments just dropped away. I think the people around us reflect our own doubts and feelings of guilt / being not worthy. And then there are those who will bring you down no matter what, sick or not, healthy or not. You don’t want them in your life anyway.
C.
What chronic illnesses do you have?
Spondyloarthropathy
What do you most want people to understand about your chronic illness?
I find it difficult that some people think my condition is something that will pass and I’ll get over it soon. Because I look healthy and am relatively young they find it hard to understand that there might be something not completely right with me, and that I’m not the same as I was, let’s say, 2 or 3 years ago.
I’d like not to have to explain that this is my new reality now, which I’m working with and trying to embrace. Telling me that I’ll soon be the same as I was before, and able to eat everything, does not help.
Ursa.
I related to so much of what everyone shared. I hope that you did too.
I would love you to share your experience in the comments or over on the Emotional Autoimmunity Facebook page.
What do you most want people to understand about your chronic illness?
warm wishes
Kerry
