Recently, I was talking to my therapist about how much I want to get back to my “old life” and the “old me,” but I don’t think that will ever happen and asked her how can I accept that? How can I make adjustments so that I can still live a good life without feeling restricted and limited by illness? This isn’t something we were able to discuss in one session and is probably something that I will be working on for the rest of my life. We started discussing the stages of grief and that it’s ok to grieve for the life I had and also for the life I thought I would have and the life I expected.
The stages of grief are different for those of us facing chronic illness than they are for those facing death. It’s not linear for us and will continue to move back and forth between stages. Right now, it seems as unpredictable to me as my symptoms – and also seems highly dependent on my symptoms.
Stage One: Denial & Isolation
What denial looks like for me:
- I ignored my symptoms for years and pushed through, thinking that chronic fatigue and chronic pain were just things that people dealt with all the time.
- I visited multiple doctors and multiple specialties looking for a simple solution or a quick cure.
- I thought I could find a way to control my illness.
- I persisted with my relentless pace and refused to slow down. I continued working and taking on more tasks than I could handle. I never said no to an invitation from friends, even when I knew there would be consequences with worsening symptoms.
- I had frequent flare-ups because I refused to acknowledge that my illness required adjustments, which I saw as limitations.
What isolation looks like for me:
- I didn’t tell anyone except my husband about the severity of my symptoms because I didn’t want to be seen as weak or dramatic.
- I have always been one to plan an outing to a sporting event or a get-together among friends, but I no longer have the energy to plan and execute these things. As a result, I don’t see my friends as much.
- It takes a lot of cognitive energy to be around people or even talk to someone on the phone and I often don’t have the energy for socialization.
- I don’t post on my old social media accounts often and don’t show what life is really like with chronic illness. I set up a separate instagram account to connect with other people with chronic illness that understand. Few IRL friends follow that account.
How I cope with denial & isolation:
- Recognize healthy vs unhealthy denial. Healthy denial means I can continue living life without obsessing about my illness and overly restricting. However, ignoring symptoms and warning signs is harmful to my body. I have to be aware of my body and what is going on so that I can better manage my symptoms. Unhealthy denial means that I am ignoring my body and what I need to improve my health.
- Reach out to friends and family for support. Sometimes I feel embarrassed or ashamed about my symptoms, but the more I share and realize that people can empathize, the more supported I feel.
- The chronic illness community online has been so helpful. I feel empowered to share more with them and when they listen without judgment, I then feel comfortable sharing more with the people in my personal life that aren’t experiencing chronic illness.
- I try to avoid comparing myself to others. We all experience illness and symptoms differently. I used to tell myself to push through because I had seen other people with serious illness do it before. I thought to myself, if Mike was able to continue working full-time while undergoing cancer treatments, then I should be able to keep working. This is a form of denial where I deny my illness and hidden disability by comparing it to others.
- I try to avoid comparing myself to “the old me.” My symptoms and illness will fluctuate. My illness is not a moral failure. It’s just something that happened to me and something that I will adjust to.
I was stuck in the denial and isolation phase for a long time. I still jump back to stage one when I see another diagnosis that mirrors my symptoms. I wonder, maybe this is the answer and I can fix it. I am constantly working on focusing on understanding my illness rather than fixing it. Seeing it as something to be fixed creates resistance to my symptoms. Focusing on understanding my illness allows me to accept my symptoms and focus on improving my quality of life while managing those symptoms. Finding adjustments also helps me get back to the things I love. For example, I can go to a football game if I use my wheelchair and earplugs. I can go out for New Years Eve if I use my wheelchair and bonus – I went to the Guinness Brewery in Baltimore and celebrated Dublin New Year at 7 pm local time, was home by 9:30 and asleep by 11pm!
It’s also important to acknowledge the effects that medical gaslighting and being disbelieved by medical professionals has on this stage. It took me a long time to get out of the denial phase because my symptoms were denied by medical professionals for so long. My endometriosis pain was denied for more than 10 years. My fatigue was denied for three years before I finally found a doctor who tested my thyroid levels and antibodies and treated me. Then, I was back into the denial phase because she continuously said that my levels were fine and that I shouldn’t have fatigue instead of listening. I avoided going to the doctor at all for a long time because I was never believed and misdiagnosed so many times – even for a broken ankle. It took me so long to realize that my pain and my fatigue are real and are having a drastic impact on my life and ability to function daily. If I had been believed from the start, maybe I would not have been in denial for so long that it made my symptoms get this bad.
Stage Two: Anger
It’s natural to become angry when your life changes due to chronic illness. It’s not fair. I remember what it was like to feel good and I haven’t felt that way in years. Everyone gets grouchy when they’re tired – and I’m always tired. I resent having to limit and restrict my activities. It’s frustrating to monitor everything I do and every thing I feel. It’s easy to feel hopeless when I’ve tried so many treatments, diets, and supplements, and have not seen much improvement
What anger looks like for me:
- I’m not just angry at specific people or situations, I am angry at the world.
- The current president, he-who-must-not-be-named, sends me into a RAGE.
- I have a hard time letting go of incidents that anger or frustrate me. For example, a woman made a rude comment to me in the store about how I shouldn’t be driving the electric scooter down the back aisles. I kept ruminating on it and kept thinking of different ways that I wished I had responded.
- LIttle irritants fill me with rage. Some small things that are incredibly irritating – not being able to open something (a jar, a bottle, candy wrappers, etc), tripping on my husband’s shoes that were left out, unsolicited health advice, to name a few. I am getting better at redirecting my thoughts when these things happen and not becoming angry.
- Anger towards myself. This is the most destructive and harmful type of anger. I blame myself for my illness and for not getting better. I blame myself for flare-ups, even when they are impacted by things that are out of my control, like weather changes or hormones in my monthly cycle. I feel helpless and weak and I hate myself for it.
How I cope with anger:
- Most importantly, I manage self-anger by practicing self-compassion. This is harder than it sounds! When I start thinking of angry thoughts about myself, I try to take a step back and look at myself the way I would look at a friend. I would stick up for my friend if someone was saying mean things to her, so I should also stick up for myself! It’s important to remind myself of the hard work that I am doing to manage my chronic illness and that I don’t deserve anger or rude remarks. It’s important to give myself credit for how far I’ve come. I can recognize the suffering I’ve endured without adding to it with angry thoughts.
- Allow myself to be vulnerable and talk it out. I shared a post on instagram about the rude comment from the woman while I was shopping with a scooter. Just the act of putting it out there deescalated my anger and made me see the humor in it. Then I received many reassuring comments from others with chronic illness or hidden disabilities and heard similar stories from a lot of people! While I am frustrated and angry that we all have endured these terrible experiences, it helps to know that it’s not personal and it’s not a reflection on me personally. It’s more of a reflection on the other person, who was also acting out of anger. It’s also ok to admit that it’s not all sunshine and rainbows all the time! Showing vulnerability and honesty helps me connect with other people and know that I’m not alone.
- Take a time-out. Sometimes when my anger fuse is particularly short, I have to avoid twitter and avoid the news because I know something small may set me off. I love to wind down and relax with a relaxing vanilla-scented candle and a funny tv show. Broad City, 30 Rock and Fleabag are my current obsessions. I can watch them over and over and over and still find something new to laugh at, while still rolling at the obvious jokes.
- Wear my suit of armor. Part of this is also recognizing my anger-triggers and preparing myself to react to them appropriately. I know that when I go out using a mobility aid, I will probably get some stares and might get some remarks. When I know that may be coming, I brace myself for it and let it roll off my back, rather than letting it get to me. I also bought some information cards and buttons to wear for when I don’t want to have to answer any questions!
- Recognize that anger can be useful. What is my anger trying to tell me? Sometimes I am angry about things that are out of my control, but sometimes I am angry because I want to change something and have been passive about it. For example, I was angry after my father said, “You aren’t one of those people that uses the motorized scooter in Wal-Mart, are you?” I calmly said, “Yeah I am because that is the only way that I am able to shop. And even with the scooter, it takes everything out of me and I crash afterwards.” It is natural to be angry because my dad was being judgmental of me and other people that need scooters while also minimizing our need for mobility devices by insinuating that “those people” use them because they’re lazy, not because they need them. This type of anger can be useful if I react to it properly, by using the tactics above, rather than by snapping at him. I was able to explain why people might not look sick but will need mobility devices and he understood.
I find myself back in the anger stage frequently and it tends to coincide with symptoms flares. I once said, “everything bothers me when I’m tired and I’m tired all the time, so everything bothers me all the time.” I felt as though I had a new threshold for anger, like my default level was now so close to the top that any little thing that piled on would send me over the edge. It has been hard work trying to reset that anger level. My symptoms made me so angry and I had to learn to be compassionate towards myself and my body. I am a work in progress, but I am trying to laugh more and roll my eyes where I used to let anger simmer and I like it better this way.
Stage Three: Bargaining
Bargaining is kind of the last chance at denial. It’s grasping at straws rather than accepting your chronic illness or hidden disability. If I do this one thing, I will recover. Or if I don’t do this anymore, I’ll recover. It’s a desperate attempt to have control over your illness, but it’s really just hoping for a magical intervention.
What bargaining looks like for me:
- If I go gluten-free, or dairy-free, or soy-free, or sugar-free, or [insert fad diet here], I will be cured.
- If I see this specialist, they will figure it out and I will be cured.
- If I get my good health back, I promise I will be a better person.
How I cope with bargaining:
- This one is pretty simple – the bargain doesn’t work and the illusion fades away. My illness persists, no matter what promises I make, so I stopped making hail-mary attempts at a cure.
- Remain hopeful without getting my hopes up. This is a delicate balance. I saw a neurologist who said, “fatigue is easy to treat, we just figure out what’s causing it and treat it.” I didn’t tell her that I’ve been working with many doctors for years and haven’t been able to figure it out and properly treat it. If she figures it out, AWESOME. But I’m not putting all of my faith into this one person and her ideas because I have been let down many times before. I will continue trying to find answers without letting myself lose hope or become discouraged if the tests all come back normal. After all, I don’t want bad news from a test result. I just want an explanation and treatment options.
I find myself moving in and out of this stage rather quickly. I used to have hope that some treatment or change in activity or demeanor would totally cure my symptoms. I thought, I’ll go gluten free and these symptoms will go away. Didn’t happen. I’ll start this thyroid medicine and in two weeks, I’ll be back to the old me. Didn’t happen. I’ll monitor my heart rate and practice pacing and I’ll be cured. Didn’t happen. I’ll use this TENS unit and a hot water bottle and go to acupuncture and I won’t have chronic pain. Didn’t happen. Now, these things do help improve my symptoms, but they haven’t cured me. I no longer expect a cure or a total relief of symptoms, but I continue trying new things to see what will improve my symptoms and improve my quality of life. I no longer find myself in the bargaining stage because I have accepted that there is no simple cure for my chronic illness, but I remain hopeful that there are treatments that will improve my symptoms and improve my quality of life.
The truth is, I don’t need anyone or anyone to “fix” me. I am amazing just as I am. Pale skin, dark circles, brittle hair, shaky hands, tired eyes, racing heart, achy legs, painful pelvis, foggy brain and all.
Stage Four: Depression
Depression is deeper than sadness and harder to relieve. Depression can be mild or severe, depending on the level of your illness or disability, other life circumstances, your personality before illness, your support system and more. Depression may increase when your symptoms flare. Being in constant pain may make you feel hopeless. The debilitating level of fatigue associated with many chronic illnesses may be confused with depression.
If you are experiencing severe depression or suicidal thoughts, please contact a mental health professional. In the US, you can call the suicide hotline for help at 1-800-273-8255.
Depression is difficult to talk about in relation to chronic illness because so many of us have had our physical symptoms written off as psychosomatic and been told “it’s all in your head.” Antidepressants are often used to treat chronic pain, but that doesn’t mean that pain is psychosomatic. These pills restore chemicals in the brain that both chronic pain and depression deplete.
Blaming physical illness on mental health has a murky past. This stems from Freud’s theories on a patient that he didn’t even see, labeled Anna O. Bertha Pappenheim was the woman behind the pseudonym. She suffered from “trance-like states, hallucinations, spasms of coughing, sleeplessness, a refusal to eat or drink, a rigid paralysis of the extremities on the right side of her body, severely disturbed vision, outbreaks of uncontrollable anger, a failure to recognize those around her, and finally a failure of language.” (Scull, Hysteria). Physician Josef Breuer, a friend of Freud’s, claimed to have cured Pappenheim by helping her trace her symptoms to traumatic events in her past, but this was a lie. Pappenheim was not cured and was institutionalized after being treated by Breuer from 1880 – 1882. She remained ill for years and recovered in 1890, becoming a social worker, writer and feminist (Jackson, Pain and Prejudice). In 1895 Freud and Breuer published their book, Studies on Hysteria, which claims that hysteria is the physical manifestation of repressed memories. It just seems so ridiculous that doctors in 2020 would believe one case study, of one woman, with clear physical symptoms, who obviously didn’t recover from this treatment!
I would like to start by saying that depression looks different for everyone and I recognize my privilege that I don’t have to worry about money right now, taking care of children or parents, I have access to medical care and I don’t face discrimination based on my race or sexual orientation. Managing depression and chronic illness is hard without those factors at play and it’s important to acknowledge the effect that race, gender, age, sexual orientation, gender identity and other factors have. My experience isn’t great, but it’s easy compared to that of womxn of color. I wish I knew how to address it, but I’ll start by acknowledging it.
What depression looks like for me:
- My depression did not cause my illness. My illness caused my depression.
- I am more depressed when my symptoms flare. This is an understandable response to the pain and anxiety of a flare.
- I become depressed if I become too overwhelmed by my symptoms, my illness or other life stressors.
- I live with chronic pain and chronic fatigue. I feel helpless and this causes me to feel depressed as well.
- I was high-strung and anxious before I developed chronic illness and I have a difficult time with the loss of control and the unpredictability of chronic illness.
- I spend a lot of time ruminating on things I didn’t have the energy or time to do.
- I long for the past and fear for the future.
- I feel worthless and have an inappropriate level of guilt for things I feel like I should be doing.
How I cope with depression:
- I am so lucky that I have a disabled therapist. I really wish that this was accessible to everyone with a disability, but I know that it’s hard to find. She recommended the book that inspired this post: Living Well with a Hidden Disability by Stacy Taylor. Having someone to talk to who is empathetic and has experienced similar situations is such a huge help. Reading books, blogs, and instagram posts from people who are also experiencing chronic illness helps me navigate depression.
- Let it out. Watch a sad movie, listen to a sad song, just cry. We don’t have to be happy smiling rainbows all the time. I get sad and ignoring it or burying it will just make it resurface later, with even more strength. With sadness, this is easier and the feeling comes and goes. With depression, it’s harder to move past it, but it helps to remember that the feeling is temporary, like all feelings.
- Help others. I was very depressed when I was no longer able to work and wanted to find something I could do to keep active while still resting. Starting this blog and joining the chronic illness online community has helped me process my difficult emotions like anger and depression. I don’t wish these feelings on others, but it is a tremendous help to know that you’re not alone and to have someone to talk to that understands. I also started volunteering with #MEAction, which has given me purpose.
- Focus on what I can do, not on what I can’t do. I was depressed because I could no longer take my dog on hikes. When my symptoms are manageable, I can take him for a short walk around the neighborhood or to the dog park, where I can sit while he plays. Focusing on taking a walk rather than missing out on a hike is hard, but it has helped so much. I think that my massive crash has helped with this change of mindset because there was a quick drop-off in what I was no longer able to do and that made it easier to accept that I needed to make adjustments. Redirecting my thoughts and reframing things so that I don’t focus only on the negative is important.
- Show self-compassion and don’t be biased! I am often overly harsh on myself. I often feel overly guilty and can’t stop thinking about what I “should” be doing even though what I really should be doing is resting. The dishes can wait until tomorrow if it means not putting myself in another flare.
- Remember that I’m not alone. Everybody feels sad sometimes and a lot of people are depressed. Thoughts and feelings are temporary. It’s important to notice them, acknowledge them, and let them pass through. I try to notice things that make me depressed without dwelling on them. Talking to someone else who has felt the same way or is dealing with a tough situation like I am helps to process the feelings and move through the depression.
- This may not be the healthiest way to cope with depression, but indulging in guilty pleasures helps lift my mood. Snuggling with my pets, eating ice cream or reese’s peanut butter cups, watching broad city, listening to nsync or jonas brothers. Sometimes I just need a quick reminder that I can still enjoy many things.
My depression strongly correlates with my symptoms. I still have a high level of motivation and I am easily depressed when my energy doesn’t match my motivation. Of course I’m depressed now that I can’t work, I often can’t leave my house, I can’t read or learn new things as well as I used to, I can’t be spontaneous, I can’t stand in line shopping, I can’t have a few drinks with friends, I can’t travel easily, the list goes on. But there are many things I can do and I find joy in discovering new ways to enjoy the things I love, like books on tape, going to games in my wheelchair, drinking flavored sparkling waters instead of beers, volunteering when my symptoms allow on a flexible schedule instead of working 50 hours per week, resting and getting cozy when I need to! It’s not as easy as just deciding to change your mind. It takes constant work, noticing when I’m stuck in a negative cycle and reframing my thoughts. Depression isn’t a moral failure and it’s not a choice — it’s a normal part of grieving and part of the process of moving towards acceptance.
Stage 5: Acceptance
Acceptance is being at peace with your life, chronic illness and all. I think of that warm feeling, laying on the beach, glowing in the sun, the sound of the waves calming me, with a soft smile on my face. That’s what acceptance feels like for me – everything feels nice, warm, peaceful, and happy.
With chronic illness, you have to move through the anger and depression to get to acceptance. If you’re like me, you will go back and forth between the five stages many, many times. The stages aren’t linear, with acceptance as the end goal and you’ll never go back. It’s a wheel that keeps on spinning. When my symptoms flare, I’m going to end up back in one of the other stages of grief and that’s ok. I can tolerate my illness more when the symptoms are mild and I am more prone to anger or depression when my symptoms flare. As I’ve been working through these feelings, I have found myself spinning through those stages faster and landing on acceptance quicker. I am finding it easier to accept that my symptoms will always be fluctuating and that I need to adjust accordingly. My life has changed a lot. I can no longer work. Some days I am only awake for a few hours. I have a hard time cooking, cleaning, and shopping. I have had to make a lot of adjustments in order to be able to do things that used to be easy – like bathing. But I don’t wish for someone else’s body or someone else’s life. I accept my illness and appreciate what does work for me – getting a wheelchair so that I will be able to go shopping, using dry shampoo instead of washing my hair as often, doing IV treatments and drinking lots of water. My body is working for me.
What acceptance looks like for me:
- Acceptance doesn’t mean giving up. It means working with my body instead of fighting against it.
- I find joy in the big picture – the people (and pets) who love me, the simple pleasures of life, the parts of my body that do work
- I live well in the present, I don’t wish for the past or fear for the future
- I connect with others who are living well with chronic illness
- I recognize that my chronic illness is part of who I am but not all of who I am
- I recognize that acceptance may come and go. It will fluctuate just like my symptoms and I won’t berate myself when it goes.
Why I have trouble with acceptance:
- My symptoms fluctuate and flare
- Some doctors are not understanding or helpful with my conditions
- My illness is progressive
- I spent many years undiagnosed with no treatment and have low trust in doctors
- I develop new symptoms and have no definitive treatment
- I am exhausted and in pain all of the time
- I can hardly function at home and am unable to work
- I don’t know if I’ll ever improve
- I feel like others don’t believe the severity of my symptoms
If grief is a cycle, it’s a vicious one. When my symptoms flare, I’m likely to fall back into the stages of anger and depression and when I’m angry or depressed, it’s likely to make my symptoms flare. If I’m at peace and accepting of my illness, my symptoms are less likely to flare, but it’s all so unpredictable. I used to think that I could control my body by eating salads and protein, by exercising and stretching. I thought I could do anything if I worked hard enough. Then I worked so hard that I worked myself into a health crisis. I used to think of all the things I could have done differently to prevent this, but there isn’t anything I could have done to control it. Knowing that it’s all out of my control has helped me accept my illness. I listen to my body now rather than trying to train it. I rest when it tells me to rest. I give it water and food that it wants. I know that my symptoms will fluctuate and that there is nothing I can do to control them, but that I can monitor them and try to ease them. I accept that I need to make adjustments and I don’t see them as limitations. It’s hard to release control when I’ve been Type-A my whole life, but it’s also like releasing your breath when you’ve been holding it for too long. The tension just goes and it feels so good to just let it go.