Yes, a part. Not the whole thing.

Oof, you couldn’t have said it better. I’ve been ill for 15 of my 25 years on this earth, and it will never get better. It’s so hard to believe that I am not only my illness. It really is soul-crushing to lose all your “lifelong” friends when you can’t keep up with them anymore, and they aren’t willing to accommodate you.

Sadly, Ozacoter, I fully relate to your comment. I have had to mourn the life I was trying to live, and accept the fact that my body just won't allow me to do most things that I used to do. Even down to holding a book to read. I have too much pain to do most things on most days. Once or twice a year I have a great day where my pain is well controlled and I can do things like house chores, shopping and cooking on the same day. Of course I pay for all of that activity for the next week or so with a pain flare and needing 14 hours of sleep every night. Still, I love those rare days when I feel almost normal.

I think they just simply mean they're not taking on the identity of a victim. If you have a victim mindset (like described in the post) then you're not allowing room for growth. Taking on the identity of a victim is a fixed mindset. Instead it sounds as though this person is moving forward and discovering their true limitations in spite of their illnesses. They're not denying it, they're just acknowledging that it is only a part of their identity.

I hear you love. I still have one friend that sticks by me but it's very hard for that pain and illness to not become a part of you because it dictates everything in your life that you do. I can't make plans because I don't know until I wake up each day whether I'm going to be able to do something. Very hard for that not to run your entire life when you can't even make plans outside of 24-hour period. I have chronic pain and something called circular vomiting syndrome and it is not pleasant. as it sounds.

Yes!! Even though my thyroid is killed off (radioactive iodine treatment), I STILL have to "mention" to doctors, others, that I have Graves disease, because it's an autoimmune disease that impacts EVERYTHING in my body

Agreed. My whole life ended with my chronic illness & constant, severe pain. I have a new life, now, but it's completely unlike my pre-sick life. Nothing is the same.

Spot on. Having a battered body that limits your ability to just stand sucks big time.

Nope. I have been dealing with spinal issues for years now. Not a single day I'm not experiencing pain. Limits my activities and life on general. I'm happy. I'm good. I know it's not who I am. My girlfriend just said the other day how she sometimes forgets about it because of how little I make my life about it.

Yup

A part of you yes. But a part that literally dictates your whole life. For me being sick in bed is why I'm depressed & have no friends in real life. It is why I'm a fan of certain artists. It is why I am who I am now. I don't make fun of my self. I just am.

You're right in the that fact. I worked for 30 years before becoming disabled. To an extent my work was my identity. It gave me independence and enabled me to show my drive in life. Afterwards I felt a gap. I didn't miss the politics of work but the satisfaction of doing something I was proud of. No one addresses this after a work career followed by disability. I won't even go into the implications of then taking controlled medication!

With having fibromyalgia and a permanent and unrepeatable shoulder and chest wall injury I fully agree with you. 10 years ago I worked full time at a job I loved and could do anything with my hubby and boys. Now most days it uses up all my energy to get out of bed or make supper. I can’t bake anymore, go for hikes with anyone or do much of anything without being in extreme pain.

I so sympathize with you. My mother developed several chronic illnesses before she died and the only one that seemed to understand her was me, because we had been through some of the same pains. I kept telling my siblings that when they develop chronic pain and illness they will understand. They would help sometimes but mostly they would avoid her except for holidays. People make me sick sometimes - especially some of the ones under your comment. They will understand one day when they become older and start to develop chronic pain and illnesses that they have to plan their life around or have to give up those hobbies and trips. Maybe they will become shutins and die alone, filled with crushing guilt over their absolute aholish treatment of others that one asked for their help and empathy.

This is what I have told my pain therapists for the last 3 years and they constantly try to convince me it's not true

I can empathize and relate to all the chronic pain and chronic illness sufferers on here. Never knowing what tomorrow has in store for us and our bodies being heavily affected by weather conditions as well, some days take all the strength and courage that you can manage just to get through the day. I wish you all the most comfy blankets to snuggle, the softest pj's, and the most gentle hugs.

It changes you, sure. But you're not just some human shaped lump of constant sick right?

I have chronic pain ... Myasthenia Gravis ... on disability for Fibromyalgia. But I am NOT my illnesses. Hobbies, interests, hopes, dreams, goals, approach to everyday living have ALL changed. I have a cane, I have a rollator, heating pad, medications, grab bars and shower chair ... the list goes on. But my illnesses and pain do not DEFINE me. They are not my identity. Change is a normal part of life. Yes, I'm in pain 24/7, sometimes more, sometimes less. Some days are house days or bed days. But I am still ME, growing, living and learning ... even if things are different.

That is a cruel thing to say. They aren't dead , they are altered to new ideas in life. My son wanted to be a pilot. instead he was the first person with Cystic Fibrosis to earn a black belt in Marshall arts. He suffered yes but also designed a tattoo about CF THIEF OF BREATH and tattooed it on himself. He also gave me a tattoo I always wanted. The horrible times were so hard so sad but he still lived more fully than some who never know pain. Find something new to do that you really want to do and defy the pain. Crush the challenge. Win in your own way. May the Lord bless you in your efforts.

Wrong. It can and should be PART of your identity. But it shouldn't be all you are. Would you rather be "the sick girl" or "the girl who draws/sings/writes/whatever" regardless of how ill you are. I'm asthmatic. Its part of who I am, but I don't let it become ALL I am. Same with my anxiety, my depression, my ADHD, my mono.

This comment is hidden. Click here to view.

But I wouldn't say it's a healthy coping mechanism. To be fair, I'm not chronically ill (I think), but I got other issues and in general making once limitaciones once entire personality, just makes one feel worse about them.

The majority of people with chronic illnesses do not detail every trial over and over again. We don't tell nearly everything we could be saying. Your wife will realise that even though she refuses to make her life about her chronic illness, her chronic illness will make her life about it. That's the very nature of chronic illnesses. The things you used to be able to do, are not things you can do anymore. People with chronic illnesses need to find a way to rearrange their lives so that they can relatively function. That is, ultimately, making your live about your chronic illness.

Agree. It is really a process and it is a hard one!

Well. Illness doesn't harm the body only you know. Symptoms, fear of death, even treatments or medical institutions can rise anxiety or be really traumatizing. It's easy for the one not experimenting those hard and tough moment in their own flesh to say "let's be happy and talk about something else" but it's so disrespectful and so selfish. Talking about something like this is a proof of trust or something we need to sometimes to deal with our s**t, to feel supported and less lonely facing our fate. If you can't handle it, maybe it's time to get help from a professional to both care about your mental health and not only physical health. So much people think illness damage the body only but the mental, the soul is damaged too. So get help.

Great points. My husband has a chronic illness and I want to support him but the next 40 years cannot just be discussions about how crappy he is feeling or what his minute to minute symptoms are!

I really don't agree with you. People who need attention need it. You don't need it, fine. Everyone is different and have different way to deal with their disabilities or illness. Some needs support, some needs space, some needs tools, some needs practice, some needs to not think about it, some needs to complain... Having a disability doesn't give you any right to judge how others behave facing their own disability and make generalities like this.