Humans desire love and understanding. We want the people close to us to validate our feelings. We want to be seen – fully and authentically.
When you’re diagnosed with a rare, serious, incurable disease – you need that understanding more than ever. Unfortunately, getting the support you need during a difficult diagnosis is extremely complicated. People will try to provide empathy and comfort, but it’s unlikely they’ll understand the depths and complexities of your experience. They’re likely going to fall short.
Since my pemphigus diagnosis, I’ve had friends and family offer support and love, but have found myself still feeling incredibly isolated, sad, confused, and angry.
I appreciate everyone who tries — really, I do! I know everyone is doing their best. It’s still a new diagnosis, and there’s much to unpack.
Quite a bit of the support I receive ends up feeling dismissive – ‘You’ve got this!’, ‘What does it hurt to think positive?’, ‘You look like you’re feeling better!’, ‘When will you be in remission?’, and ‘Be patient – you have lots to be hopeful about!’
I don’t feel like many people truly get it. My life will never be the same again – even if the best case scenarios happen for me. The scientific data about my disease shows I have a lot to fear. It’s a heavy burden to carry, and no one can really fix that. People are uncomfortable with my despair.
And to be honest, people really can’t get it. It doesn’t matter how much they want to help, or how much they love me and care about my well-being. The experience of this diagnosis carries some parallels to other challenges that are common to the human experience, but the permanence, unpredictability and severity make the loss so much more complex than most other illnesses. Unless you’ve been through the same type of trauma, you just can’t fully understand.
The emotions I’m having feel ugly and destructive. They sit unhappily, like something rotten festering at my core. There is anger, guilt, shame, bitterness, despair, sorrow, panic, and envy. I keep asking myself if I’m having an outsized reaction to my health challenges. Am I being melodramatic? Am I being narcissistic? Are my expectations of others reasonable? Is the way I’m feeling normal?
I don’t want to feel like this. I want to feel hope. I want to feel like I have some agency and control over my life. I want to feel like there is some value to my life and my existence.
So, I went out and tried to find my people – the ones who have had their lives shattered by a serious, chronic health issue.
I didn’t have to look hard or far. I found lots of people feeling the same tidal waves of despair that I am. They’re on Reddit. They’re on Instagram and Facebook. They’re in online support groups. They have things like MS or Stage 4 Cancer… or something so rare it doesn’t even have a name.
We’re All Shattered and Desperate
The common sentiments I saw over and over:
- I’m a burden to everyone
- I can’t make plans
- I have no future
- I feel trapped in my broken body
- My life is over
- I’m not me anymore
- I’m ugly
- I’m ashamed
- I’m overwhelmed by all the unknowns and what-ifs
- I’m alone and no one understands what I’m going through
It was like looking into a mirror. We can’t all be narcissists having outsized reactions to our diseases. My dark, ugly feelings aren’t even remotely rare or unusual. The psychological burden of chronic illness is heavy and a common breakdown point for everyone in this situation.
But the real question is HOW DO I MOVE ON? Can I reclaim my life and find a sense of agency? How do I live a fulfilling existence without my disease being my only identity? How do I release the shame, guilt and embarrassment I feel about being so broken and disgusting? Surely, there must still be some way to find my way forward amidst all this loss and grief?
After spending lots of time reading about other people’s feelings, I felt validated. I’m not just a negative person who thrives on self-pity and whining. My emotions are normal and expected for people in this reality. We’re all on our knees begging for relief or salvation (or maybe just some sort of finish line.)
I can’t stay in this limbo, living a half life.
My next step was looking for resources and support specifically for living well with a chronic illness. I didn’t want advice about natural treatments, gut health, or special diets. I have confidence in my doctor and my treatment plan.
Rather, I wanted coaching on how to operate psychologically in my ‘new normal’. I wanted reassurances that things will somehow be OK, even though they’re forever changed. But most of all, I wanted help and understanding from people who are in this fight.
Finding a Lifeline in Podcasts
That query brought me to a few different podcasts. All of them are hosted by people who have serious autoimmune illnesses. Not all of the episodes are exactly what I’m looking for, but I found a goldmine of content that is helpful and validating for me.
It’s ironic – these recorded voices have felt incredibly supportive and present to me – more understanding than the real people around me. They’re saying the things I have been needing to hear.
Since finding these three podcasts, I’ve pretty much put all my other listening/reading material aside and have been binge listening.
The first podcast, Emotional Autoimmunity, talks a lot about the stages of grief. Most people are familiar with Elisabeth Kübler-Ross’s 5 Stages of Grief from her book On Death and Dying. The podcaster, Kerry Jeffery, on Emotional Autoimmunity has developed a similar 8-Stage Grief model for people going through a serious autoimmune diagnosis. I highly suggest checking it out if this battle is yours, too.
Jeffery talks about how people move through the stages in a non-linear and often repeating manner as their disease changes and evolves. There are stages where people are prone to get stuck. This has definitely been true in my experience. I can see pieces of my experience in each of her stages.
Hopefully, as the weeks pass and I wait to see if rituximab puts me into remission, I’ll be growing emotionally and learning how to make the best of the life I have left. Hopefully, I’ll be psychologically prepared to face whatever challenges are placed before me. I expect there will be many bad days, but hopefully some good ones will sneak in, too.
How Weird 