Chronic illness is forever.
Symptoms may come and go, energy and mood and abilities can and do fluctuate and it can often feel like the only people who really do understand what you are feeling is other people who have chronic illness.
The model we have for illness in our society is pretty basic. You get sick and you recover or you get sick and you die. Unless you have an obvious, visible disability or sign of the illness, it becomes invisible. As the people living in our bodies, we know how it feels, we know how much it can change day to day or even, moment to moment and we need to make many compromises, changes and adaptations to continue to live and function as best and happily as we can.
I recently asked my wonderful Facebook community to share what they believe people should really know and understand about life with chronic illness and the response was amazing. I am sharing all the responses here and I know that they come from the heart.
Life with chronic illness is that much harder when the people around you just don’t seem to understand or even want to understand.
So if you have someone with chronic illness in your life, a partner, friend, family member or co-worker, here is what we really think you should know.
So many things, but starting basic: that it’s CHRONIC. No tricks, just the actual definition of long-lasting or recurring, perpetual, continuing indefinitely. No matter how many times I try to say or explain that I have a chronic illness, there is still an attitude of, “oh, you’re still sick? You should be better by now.”
It’s not a choice, I’m not being lazy.
Oi – so many things. For me, it changes everything! What you eat, where you go, how you plan and most importantly, who you are.
Our ‘normal’ is not the same as your ‘normal’.
That you miss who you used to be. The person that was carefree. The person that could travel the world, have dinner with friends and just smile and enjoy the flow. It would be great if I didn’t have to plan every event, to make sure that I can eat something when I get there, or make sure I have enough energy to get through the outing. That hearing you need to “toughen up and think positive” doesn’t change the fatigue or pain or illness. As we are trying, that every time we dream up a new plan for curing ourselves with lifestyle choices. It takes positive thinking and hope to dream up the next plan. For me I must be up to plan 212 by now.
I was telling a friend tonight that I want to eat and drink like everyone else. Live, move and think like everyone else. We don’t have that luxury.
I cant just “push through it” today and a ‘good’ day for me is actually most likely the equivalent of an everyday persons horrible day!
That it waxes and wanes so you don’t typically look “sick”. You may have a stretch of days where you feel great then weeks of feeling terrible. You may also look great on the outside despite being in horrible pain and feeling awful because you’ve learned how to disguise things so well.
Just because I look good to you doesn’t mean I feel good. I get this all the time.
That autoimmune disease/chronic illness is ever changing. It’s like a roller coaster ride. One day you feel okay and the next, you feel like your energy has been drained. Chronic illnesses are mostly invisible diseases so others can’t see what you are dealing with or how you feel.
The bits I allow you to see are the best bits. I don’t always look as good. Those are the days you won’t see me because I am feeling so pitiful and weak.
Patience and ask before saying anything, and being comprehensive. Everybody behaves as if they know everything, specially the: “You don’t eat well, you don’t exercise, it’s all in our minds, it’s not possible to be that sick all the time”.
I mean: not to be a prejudiced person would be the key and stand in the REAL thought that everybody is different, healthy or not. Why be so judgmental and “scared” of sick people? Scared enough for wanting to be far away. We’re in a time everybody think is so spiritual but the truth is, humans have become more superficial, cruel and egoist.
The isolation is the worst. No one wants to hear, “I’m in pain”, again, I’m exhausted, again. I can’t hold a decent conversation in a flare and brain-fog is embarrassing. Don’t discuss the pink elephant in the room or they consider it a broken record. Smile and pretend you are happy and ok or you make others miserable. Then I isolate as self preservation. I understand it’s a broken record and repetitive. But if you say, ” how are you”, you don’t want honesty, dear. No, you want sparkles and happy. So, I isolate a lot. I’m quiet, a lot. It keeps everyone else happier.
It’s on-going, it’s up and down, some days are better than others. We don’t choose to be this way, no one would!
It changes day to day. Just because I did something in the past doesn’t mean I’ll do it again today, and the best way to know how I feel about doing something right now is to ask first, especially about food and reintroductions if you’re going to cook for me!
I’m not really flakey. I don’t cancel plans or forget things said to me for the fun of it. I’m not “difficult” on purpose. My AI issues have changed who I am, who I want to be, and as frustrating as you think it is, or as unbelievable, is not as sad, frustrating, angering, depressing, isolating as I find it to be. I’m tired of not being able to do the things I want to, or for how long I want to, or when I want to. I’m tired of trying to explain my illnesses, allergies, diet, and lifestyle choices. I’m exhausted. My brain is exhausted. The self-loathing that comes with this is difficult enough to bear without judgement from “well meaning” so-called friends and family.
Don’t judge. You never know someone’s story. We all have a story. Until you have lived what someone else has there is no way to truly understand. Be curious and attempt to become more informed on autoimmunity as it does NOT discriminate! It could happen to you at any given moment.
Because of my AI and the constant pain I live with, I was able to bear the pain of my broken foot and live a normal (for me) life. Also because of my AI, my foot still doesn’t feel healed. No, I’m not trying to milk your sympathy. Yes, I’m doing what I can for it. No, I’m not gonna talk to you about it so you can satisfy your curiosity on me. My body just doesn’t heal like it used to. Part of healing properly is getting inflammation down. That cannot be done when your body is constantly inflamed. You know something that causes inflammation? Stress. Know what stresses me out? Constant nagging questions that come across as judgmental rather that curious and caring and the microscopic managing of my details. The people in my life who don’t have AI have a tendency to make me feel like a circus freak. I’m not the Bearded Lady and my entire life’s details don’t need to be on display for you. Know who else makes me feel this way? Me. I’m constantly questioning every choice, every decision, every action. Am I doing the right thing? Am I gonna hurt later? Will I be able to keep that lunch date next week? How will I ever get a job? If I got a job, could I keep it? My stamina won’t allow me to work full time, part time doesn’t include insurance. If you work at all, you have to pay taxes. Part time doesn’t cover bills AND health insurance, which means being penalised because you either get insurance and ignore the bills or pay the bills and ignore the insurance.
Just because I keep going and act like I am okay; I am NOT okay. I am afraid to stop moving for fear of the disease winning. Stress exasperates my illness so please people don’t judge because it stresses me out.
Chronic illness takes away the spontaneous side of life. When that happens people whom you thought were friends fade away.
I was a decent actress before my downward health spiral into full-blown autoimmune disease. I’m an amazing one now. I deserve a freaking Oscar.
I think another part of the problem is this: Everyone seems to know someone who is a “high-functioning” AI sufferer, and they don’t understand why we also aren’t this way. You take your medicine, why aren’t you all better now? Why can’t your doctor do more for you to make you better? Why? Because mainstream medicine doesn’t want to get the bottom of what is actually making me so sick and pharma just wants to pump me full of different medicines, AND it’s not a one-size-fits-all kind of fix!
That people need compassion.
That you can feel wonderful one day. Then wake up the next day feeling absolutely terrible with no explanation!
It is not evidence of a moral failing; weak will power, bad karma (as caused by bad genes?) or anything else that will let other people feel superior and comfortable. The good people let it be for no reason and stick to the love.
I don’t get to plan when a good day occurs, not doing something I like today won’t mean I’m well enough to do your thing tomorrow, it may mean I miss out on both.
Just because you can’t see my pain does not mean it’s not there.
The overwhelming feeling that the person you were before you became chronically ill is no longer there. I remember my brother-in-law saying to me, “you have changed, you used to be so bubbly and full of life”. I will never forget those words. Grieving the loss of that person and coming to terms with the new you is very challenging. No one but you can understand just how life changing it is.
I am not lazy and am actually very busy every day being my own advocate and medical researcher as there are very few medical professionals who even believe I am physically ill. Not believing me is the same as saying I am lying. That is extremely hurtful and not helpful.
I may have some psychiatric symptoms but I am not mentally ill. The root cause is physical.
I do not isolate because I am chronically depressed although I do experience depression. I have to isolate myself because there are sounds, sights, smells and people which can seem normal to a healthy individual but will overload my very sensitive system, trigger my symptoms and make me ill. I must avoid them to protect my health. I do not enjoy being isolated, it is a necessity. I am not being rude or disrespectful. I am trying to survive.
I am not being irresponsible because my treatment comes from internet sources. I thoroughly research everything I do or do not put in my body or do/do not do to my body. I have tried, ad nauseam, the traditional medical approaches without success. There are legitimate sources on the internet that, when properly researched and personalised, have helped me improve my quality of life. I am not rejecting Western medicine, I am using all the resources I have available to me to survive this chronic illness that is trying to take my life away from me.
You will see me try some things that may seem very unorthodox or strange to you such as refusing to eat or cook from plastic or refusing food that is not organic, eating more fat than vegetables, throwing away anything and everything containing chemicals including my makeup. I do understand these actions might seem extreme or silly to a healthy person. Please understand that when one has been sick as long as I have I am truly willing to try anything, within reason, to improve. I am not trying to convince you that these are the “right” ways to live or eat. I am trying to help ME and my body. It is NOT a statement or judgement of how you live and I do not expect you to do the same. We are all very different even among the chronically ill and everyone has different needs. Please don’t judge me for trying to adapt to the needs of my body as strange as my choices may seem to you.
I am very educated about my illness so thank you but eating ___ will not cure me, drinking____ will not alleviate my pain, that diet might have worked for your friend’s sister’s sister but it doesn’t work for me. Yes I HAVE tried that and so on and so on. Don’t think you know my disease better than I know it PLEASE!!
With all the talk of AIP and Paleo diets, yes these will make you feel better and alleviate your symptoms but you still have to manage your disease daily. I think this is why we struggle so much too, you can’t hide from our disease. We live it day in and day out, think about it 24/7. It dictates so much of our daily lives. If we are having a good day we know tomorrow may be a bad one. Planning for the weekend, praying that when you wake up Saturday morning you can do all you hoped!
I am not choosing to feel poorly. Over the past 5 years I have retreated from nearly all real-life social activities because ultimately it is more comfortable than frequently cancelling plans or struggling to conceal increased pain or feeling judged and criticized for not fully participating in an event.
The symptoms change day to day, even hour to hour. They are not “cured” by taking a certain medication, or build up then resolve and go away with time, in the way of the “typical” illnesses I’d experienced before autoimmunity.
Even though we look perfectly normal on the outside, on the inside we are dealing with so much. Including chronic inflammation, joint pain, hormonal imbalance issues, migraines and amidst all of that, we never let anyone in on our secret struggle of holding it all together to make it through each day. We are the silent warriors.
I can be having a bad day and still look perfectly fine.
We are not lazy. We are utterly exhausted from the moment we wake up until the moment we lay down.
Swallowing a pill doesn’t magically make everything better. It helps, but often isn’t the be all and end all.
My good health streak can and will come crashing down at any given moment. No matter what I do or don’t do. I can’t control it.
Every day can be different and each day I really am doing the best I can to live the best I can. It means learning how to go with the flow when having a flare, high pain or just being so tired you can barely function. It’s having priorities and making choices of what I will or won’t choose to do in order to be able to do the things that are most important to me and for my family. If I over do or put my energy into things that aren’t as important then I’m not able to say yes to doing something with my children after their home from school. It’s a balancing act of saying yes and no to things while taking care of myself.
One thing for me is the fact that this disease is movable and unpredictable. The pain and inflammation travels to different parts of my body, inside and out. My joints are affected as is my lungs, heart and possibly brain. No, it isn’t the same as old age arthritis! I’m only 53 and have had this for at least 10 years. We need people to be kind, to listen and to suspend judgement.
I will not feel better if I go out.
Losing weight may or may not help me feel better but it will not CURE my illness and it is not the CAUSE of my illness. Difficulty losing weight is a SYMPTOM. Fat shaming me is not helping me.
That it doesn’t define me. It’s hard when people always ask “can you have this food?” I know they care but I’m a healthy eater and I choose not to have it. Stop asking what I can have and not have.
Your symptoms and struggles may be totally different than someone with the same condition.
“Aah but you look bright and fit, you don’t look sick !” l usually feel like punching them in the face but I don’t even have the energy.
It’s not my fault.
It’s a new life and lifestyle, unwanted, life limiting and frustrating. We are still us but we have learned not to take anything for granted.
Just because I do not look sick, does not mean that I am healthy.
I have good days and bad days. sometimes I fluctuate in hours and sometimes its days or weeks. I have found that the AIP diet helps. a lot. but sometimes I need a bowl of ice-cream or a piece of cake. I can follow my AIP lifestyle for months at time. Even when I falter and have a few noncompliant foods I am still 90% AIP. My hubby will see me eat that bowl of ice cream and say “thats why you are hurting” or “don’t complain when your joints hurt tomorrow”. It makes me feel guilty, like I have to hide out and sneak. I just wish people would support my diet choices and not criticise. I feel like people monitor my healthy diet more than they do their own dairy, grain, chocolate loving selves.
That I’ll be “right as rain” once my ever-changing dosage works, that I’m pretending to be sick because I don’t look like it.
That talking about our experience and pain doesn’t automatically equate to victimhood. Sharing does not mean we are identifying ourselves as a victim.
“No I can’t eat that and I will be happy to explain. And yes I hope you will understand BUT I can’t help it if you don’t.
It was important to everyone who participated that these posts to be anonymous because we do not want to be judged.
So many people do not feel safe, supported or understood when they try to explain the impact chronic illness has on every area of their lives, every single day.
None of us want to feel like victims or be seen as victims.
Most of all, what those of us with chronic illness most want from you, as our family, our partners, our friends and our communities is that you acknowledge the fact of our chronic illness, try to take it into consideration, have genuine interest in how we are feeling and listen to what we have to say, rather than try to “fix us” or give us solutions or get frustrated with us.
Trust me when I say that all of our waking moments are spent trying to find ways to help ourselves feel better because we truly know that our lives depend on it.