Say Goodbye to the Version of Me You Knew: A Letter to Friends & Family of Chronically Ill People

My experience joining the world of the dynamically disabled and chronically ill was somewhat unusual in that my friends and family were almost universally supportive and understanding. For years I’ve heard stories from my chronically ill friends of loved ones who abandoned them after they became sick, or who refused to believe that their illness was real. For a long time, I’ve wanted to write a letter to the friends & family of chronically ill people.

But because I didn’t need such a letter for myself, this didn’t come naturally to me. Despite having written about chronic illness for years, it was only about a month ago that I finally got an idea for what I thought these loved ones needed to hear. So, this letter isn’t really supposed to be about me, though it’s roughly based on my own experiences as a chronically ill person. It’s intended to be a larger representation of the experience of chronically ill people. And if a chronically ill loved one has sent this to you, it means they want you in their life and they want you to understand. Read on.

CN: extensive discussion of the emotional and physical impact of chronic illness and ableism from the people around you

My dear friend,

I know that you are currently struggling; Struggling to reconcile the person that you knew me to be in the past with the person I am now. You may not even recognize that I am a different person. But my body has changed, my understanding of my body has changed, and so too have I.

It must have been hard for you. Suddenly, I was turning down all your invitations to hang out when we used to have frequent adventures. Even when I could go out, everything turned into a limitation: No, I can’t stay out that late, I need to go to bed. No, I can’t sit at the bar, I need a seat with a back. No, I can’t go to that restaurant, they don’t have anything I can eat.

And in addition to pulling back so hard on what I can offer, I also need more. I need help running errands and picking up medication. I need help doing basic chores around the house. I need help moving the new sofa inside but I need to sit down while you do it. I need someone to listen to me talk about my constant doctor’s appointments, possible diagnoses, symptoms, medication changes, and side effects. I need a lot.

I want to start out by acknowledging that this is a change. You understood our relationship to include certain activities to bond over, a certain amount of time to commit to, a certain balance of give and take. And our relationship, as it was before, is no longer available to you. You have lost something.

But you are deeply important to me and while some of the changes in my behavior might read to you as if I’m pushing you away, I actually very much want to continue to have you in my life. But I need you to read this and really take it in so that you understand what being in my life going forward entails. I love you and I hope you still love me. If you do, please listen.

What Chronic Illness Looks Like From the Inside

You know what my illness looks like from the outside but I want to tell you a little bit about what it’s been like for me to transition from a healthy person to a chronically ill person.

It started with just a handful of symptoms that I could manage okay. I’d pop a few extra pills, drink an extra cup of coffee, and push through. As the symptoms continued and started to worsen, I went to a few doctors about it. Not much progress was made, so I kept on pushing through, hoping it would go away. It started out so small, you probably didn’t even know that I was doing this.

But then the symptoms started interfering with my daily life. I had to stop taking on extra shifts at work because I was far too tired to work more. I started going to bed earlier. I needed to take naps in the middle of the day. I started reading ingredient labels more carefully and eating out less as my body’s tolerance for food changed, sometimes at an alarming pace. I invested in heating pads and foam rollers and prayed every day that I’d wake up and not be in pain. But still, I did my best to absorb the impact of all these changes so they wouldn’t affect the people around me.

Despite my constant dedication to preventing it, slowly but surely, this illness took over my entire life until it was unrecognizable from the life I had before.

And I didn’t tell you. Not really, not the full story of what I was going through. I didn’t tell you because until now, it was completely normal for everyone around me to not talk about their health, to de-emphasize any problem they had, to try to ignore their pain and do the things expected of them anyways. I tried to follow their lead and do the same.

But until now, everyone I had ever met with a health problem fell into one of three categories: 1. The problem was temporary, like having the stomach flu, or a broken leg, and they got better. 2. The problem was mild enough that a doctor never got involved. Or 3. The problem was obviously medically serious and the illness eventually lead to their death.

The doctors haven’t found anything to suggest I’m in category 3 so I tried very hard to fit into one of those first two categories. I tried to make the symptoms go away. I tried to live with them as if I was unaffected. But I just couldn’t. And I can’t tell you how painful it is that it was beyond my power to do so.

Because I didn’t know that there was a fourth category. I have a chronic illness. That means I’m sick and I probably won’t die from it but I’m not going to get better.

I don’t blame you for not knowing about this fourth category, since I didn’t either. All of this has been brand new territory for me. We’re learning together. But now, I want to share with you the things I need you to know in order for us to be as close as we once were, now with a chronically ill body in the mix.

My Physical Ability Will Vary from Day to Day

Probably one of the most confusing aspects of my illness for people to view from afar is how some days I seem to act like my old self, and some days I have to respond to every request with, “I can’t.” We tend to think of illness and ability as something that is on or off. Either you are sick and need to rest, or you are well. Either you cannot walk and require a wheelchair, or you can run freely. The truth is that bodies don’t actually work this way.

Do you remember the last time you had a bad cold that took you out for a week or more? Do you remember how during that time, you had to put off all your normal responsibilities like grocery shopping, social engagements, and dental appointments? And do you remember how on the first day you felt well enough to rejoin the world of the living, you were so excited to be able to do things again that you wore yourself out in just a few hours and had to go back to bed?

I live my life shifting between those days of full illness where I cannot leave the house, and the days of shaky, temporary ability where I can get some things done but I may run out of resources at any moment. Maybe on a truly amazing day, I feel as if I am well again. But my wellness is what is temporary. My illness is not.

A great deal of my focus is devoted to managing my resources because what I have available on each given day is different. Don’t be surprised if something I could do last week, I have to say no to this week. Folks who deal with chronic illness call this process of resource management “Spoon Theory” which you can learn more about here. I know this inconsistency can be frustrating. Imagine having your own body give out on you at random! But please, be patient with me, and be ready to adapt and meet me wherever me and my body are in this current moment.

My Limitations Are Non-Negotiable

When I was healthy, I could put up with some extra pain, sleep deprivation, hunger, or other hardship if it was temporary and later I’d recover and bounce back. So when I say, “I can’t” it might seem frustrating and selfish that I’m refusing to endure that temporary hardship, especially if it negatively impacts you.

But now that I’m sick, recovery from an additional challenge looks very different. Pushing through the pain when I have reached my limit may mean I can’t get out of bed for a week. It could even result in my permanently injuring myself or flaring my illness in a way that’s not recoverable. Ignoring my limits has a much higher cost and it takes much, much longer to stabilize afterward.

Because I am constantly having to ration my resources to get through the day, I am already in the practice of pushing myself as close to my limit as possible, without sabotaging my health. When I say, “I can’t” it doesn’t mean that I am approaching my limit and have given up prematurely. It means I have already pushed through and I have nothing more to give without harming myself. It’s not a choice. It’s a requirement that my body has informed me about.

Doctors Aren’t the Solution You Think They Are

Growing up, I was always taught that if you have a health problem, you go to a doctor, and they fix you! If you have an infection, they give you antibiotics. If you sprain your ankle, they wrap your foot in a brace and instruct you to use crutches for a month. If you have high blood pressure, they might recommend a specific diet and exercise regimen until it’s stable again. So when you hear about my symptoms, it can be tempting to just push me to go to the doctor about it.

But the truth is, there are dozens of illnesses that have no cure, many that have no medication or therapy designed for the specific illness either. Many people go through life managing a truckload of symptoms that will never resolve themselves. Doctors can’t fix every health problem.

But even before you get to the diagnosis and treatment plan, there are many hurdles to addressing a chronic illness with a medical professional. Primary Care physicians aren’t set up to treat chronic illnesses easily. Unless your illness presents in certain obvious ways, it’s common for doctors to assume your issue is mild and temporary, unless you come back, repeatedly, over a longer period of time. Not all doctors have a wide range of expertise in unusual illnesses, and not all illnesses have conclusive tests available to diagnose them. You can be sick for years, visiting plenty of doctors, and not even know what your illness is, let alone how to address it.

So, yes. I have been to the doctor. And no, that won’t make my illness go away.

Assume I’ve Already Tried It

When a friend posts on social media that they’ve been dealing with a problem, it’s the most intuitive thing in the world to chime in with suggestions for how to solve it. When we hear about someone’s problem, we don’t know all the potential solutions they’ve already tried and it’s easy to think that the problem would be solved already if they knew about our solution.

But when you have a chronic illness, you are constantly trying treatments. Living 24/7 in a sick body, I would like nothing more than to get rid of my symptoms. I would do anything to make that happen! My every waking moment has been dedicated to practicing new habits, experimenting with dietary changes, researching treatments, asking my doctor for referrals. And nine times out of ten, when someone suggests a treatment for my illness, I’ve already tried it.

“Have you tried yoga?” is actually a joke within the chronic illness community, and it’s intended to symbolize the broad pattern of people suggesting treatments that we’ve already tried and were ineffective or even harmful. If you have a possible solution for my illness that you want to share with me, please ask before sharing it to see if I want to hear it, and remember that there is a very good chance I already know about it and know that it doesn’t work for me.

Trust My Judgement of Myself

One of the most important lessons my chronically ill body has taught me is how to trust myself: I need to trust my body when it says no, I need to trust my body when it says something is wrong, I need to trust my body when it says this pain is different from yesterday’s pain, even if it’s in the same place. I need to trust it because I am the only person who has full access to the information about what it’s like to be in my body. Doctors and tests can only tell me so much. Listening to me talk about my own body is getting information from the source.

But another lesson my chronically ill body has taught me is that culturally, when someone verbalizes that they are physically suffering, a significant portion of people have been taught to distrust this information. So, if I say, “My back is really hurting today” a common response might be, “Oh, you’ll be fine.” But there is no room in this framework for my health to be respected or tended to. It assumes I still have the capacity to push down my suffering if I choose to, when I do not.

Perhaps part of our tendency to distrust people’s analysis of their own bodies is that when we look at someone, we have a very limited amount of information about what they are experiencing. Based on visual cues, we may not see signs of serious illness or suffering. But those externally visible cues are only a small fraction of the information I have about my own body. I have access to all my internal sensations, my own history of these sensations and what they resulted in later, and relevant medical knowledge given to me by my doctor. Please, treat me as an authority on the topic of my own health.

This is Not the Path I Would Have Chosen

One of the internal sensations that you cannot see on the outside of my body is whether I am trying not to be sick. Am I doing this all for attention, sympathy, or to get out of doing things I don’t want to do? Am I making myself sick through worrying and over-analysis of my symptoms? Am I trying to get better? To answer that question, I want to go back to sharing my perspective of this process.

Because of my sickness, I have lost large swaths of my life. I have lost friends. I have lost the activities I enjoy most in life. I’ve lost my career. I’ve lost access to consistent autonomy and the ability to support myself. I have lost the experience of being awake without pain. I have lost some of my favorite foods and snacks. I have lost time. I have lost freedom. I have lost the ability to choose whether or not I do a given task. I have lost a significant part of myself.

And that attention people think I’m angling for? The vast majority of it is negative, scrutiny, distrust, undermining, and dismissal. If I could choose to get back all the richness and freedom and connection of my life before I was sick, and in exchange, never hear another comment doubting that my symptoms are real? I would happily jump for that choice.

But that is the crux of the issue: My illness is not a choice. I did not ask for any of this to happen to me. It is not in my power to make my illness go away. My illness is here and it’s my job to live with it as best I can.

I have no way to prove to you that this is true. There is no way I can definitively demonstrate that I am trying hard “enough” to get better and that there is nothing else in my control to do differently. So, instead, I’ll ask you to consult your memory of the person you know me to be. Do I have a history of manipulating people just to get the attention I want? Do I have a history of lying about the difficulties I’ve gone through? Do I have a history of selfishness such that I would never be interested in helping the people around me but expect them to help me every time?

My sincere hope is that you know that none of those things are true, that I am not that person, and that I am suffering through no choice of my own. If you cannot see that I am not and have never been that person, well, it sounds like you would be better off without me in your life. But my hope is that instead, you can view my situation with compassion, rather than scrutiny, because I am someone that you care about.

I did not choose to be on this path. It is a difficult and lonely one to be on. And it would truly bring me joy for you to choose to come join me on this new path I’ll be taking from here on out.