I’ve been diagnosed with Common Variable Immunodeficiency (CVID) for over three years now and I’ve noticed something that no doctors or nurses have ever warned me about.
Something that happens to me so consistently, I’m not really sure why there isn’t, at the very least, a brochure handed to me to help me out when I go through it.
And that is, how bloody hard it is to cope with medication, treatment, or health management changes.
Have you been put on a new drug? Symptom management change? Has there been an update in your treatment/management?
What I’ve found – and when I’ve spoken to others, they’ve felt the same – is that I go through a lot mentally and physically when things like this change. Every single time!
I think it’s extremely under-recognised that these changes in your life, even if they don’t sound big, can really, seriously affect how you feel.
Pills are small – how could they be affecting you like this? What is an hour of your day being lost if it means your health will improve? What is half a day in a hospital every month if it means you live?
But it’s not as simple as that. Humans are complicated. Emotions are complicated. And we should talk about our mental health more.
We often go through stages of grief when our medical treatments change because we experience loss.
While we may gain better health, we may also have lost our past healthy body that didn’t need this new medicine/treatment/symptom management. We may have lost a level of control over our life as we have to make room for this new thing.
A counsellor told me that I’d go through the 5 stages of grief dealing with my CVID diagnosis, and I am coming to understand that we deal with grief like this in many aspects in our life.
So I’m going to explain the 5 stages of grief and how I think I respond to them when I undergo medical treatment change. I would be very interested to know if others feel the same or different or would add or change anything I’ve put down!
The 5 stages of grief with medical treatment change:
Note that generally, people don’t always move through these in a nice orderly fashion. You might jump back and forward in no particular order through the different phases, they might overlap. There is no way to deal with grief wrong, this is just a way to understand what you’re dealing with.
This is the feeling of “this can’t be happening to me”, “what if this isn’t right?”, “it’s not a big deal, it’ll go away”, or maybe even “I don’t need this medication”. It’s a natural defence mechanism to deal with the shock of this change. It could be dangerous as you might convince yourself that you don’t need your medication when you do.
When I was diagnosed with CVID after struggling with my health for years. I was very quickly put on Intravenous Immunoglobulins (IVIg) as I was very, very ill, but I was terrified that I might have been misdiagnosed.
I was so scared that they’d decide not to give me my IVIg and just call me a hypochondriac and send me home. I knew it was real, but struggled to really believe that I was finally getting the treatment I needed until they had put the IV into my hand and started the infusion. I didn’t believe the treatment was for me until I was receiving it.
This is the intense feeling of vulnerability which ends up expressed as anger or frustration. You might be angry that this happened to you but not other people, and/or you might try to find something or someone (even yourself) to blame for this. “Why me?!”, “It’s not fair!”, “Why would this happen?”.
Recently I’ve had a diagnosis of Lymphocytic Colitis and been given steroids to try to combat it. It’s been rough and I’m definitely going through periods of anger. Anger that I have to take steroids to be able to eat properly, anger that they’re not even working(!), anger that I think they’re making me more angry.
One night I was drunk and out of nowhere angrily kicked a bush and started crying “I hate this! I hate this! I hate my life!”. Why did I kick an innocent hedge? I don’t know, but clearly deep down, I was hurting badly and very angry about it.
This is when you start bargaining with yourself or a higher power, thinking about what you could have done to avoid this illness and therefore the medication/treatment. It’s often done with “if only” or “what if” statements.
For me, the bargaining feelings around my gut issues were: If only I had taken more probiotics. If only I had been nicer to my gut and avoided food that made my tummy hurt. If only my CVID had been diagnosed sooner so I didn’t have to take so many antibiotics and ruin my gut.
What if I had advocated harder for myself and been diagnosed earlier? What if I hadn’t drunk alcohol on antibiotics? What if I hadn’t eaten that American fast food?
I promise I’ll eat better if you can make this all disappear!
This is those feelings of emptiness, sadness, hopelessness and/or isolation. It might be hard to get out of bed, you may be low energy and not want to do things or see people. “Why even bother?”, “Is this even worth it?”, “What does my future hold?”. This stage could be dangerous if you feel like you want to skip your medication or not make or go to doctors appointments.
This is the stage that I personally notice the strongest. I had never really understand why I ended up feeling so depressed and unmotivated just after starting on a new treatment – it just happened. An example is when I requested to move from IVIg (monthly hospital treatments) to SCIg (weekly home infusions you do yourself). I was really happy to be able to be independent in my treatments, but a couple of weeks in I just felt *bleh*. I just wanted to cry all the time.
I knew it was because of the change to SCIg but couldn’t pinpoint why. I was grateful and happy to be on it, but my lifestyle had to change to make room for it. I didn’t want to HAVE to do it. Life didn’t feel fair. I didn’t miss IVIg either. I just wanted to hide in my room and draw the curtains and cry and eat and watch Netflix on my own.
This is the stage where you finally feel like it’s all going to be ok. You may not embrace your medical treatment with open arms, you may not even be happy about it, but you might accept that this is your new reality. This is your new normal – taking the drugs, doing the new symptom management, getting your treatment, or something changing. “It’s going to be ok”, “I can do this”, “I can make this work for me”.
Not everyone might reach this stage, or you might bounce in and out of it. Accepting something that feels fundamentally unfair because not everyone has to do it is very difficult, and also very understandable.
I’d say I have a level of acceptance with my CVID now. I’ve recently realised that if I had the option to go back in time and live my life again without an immune deficiency, I don’t think I’d take it. I feel like I have become a stronger, better person for having had this condition so I have come to appreciate what I’ve gained from it.
The treatment has become a part of my routine and I’m starting to understand my limits (and when to ignore them). This has taken nearly four years to get to this place, and no doubt I’ll flip back into hating it sometime soon because it does make my life bloody hard sometime!
So to summarise, I believe that no matter how positive a change to your medical treatment is, it can be very hard to deal with in your every day life. You may suffer loss – loss of your old body, loss of your control – and go through the 5 stages of grief.
This is completely normal and very common as far as I can tell anecdotally from talking to my chronically ill friends. You are not alone, and hopefully the above explanation of the stages helps you understand what you’re going through.
I strongly believe that this should be raised by medical professionals when prescribing these changes. Especially the long term or life-long medical treatments! They hit us hard.
I also recommend finding a counsellor who specialises in chronic illness to talk through your experience and feelings if you are finding yourself in this situation. It is a huge relief to have a professional validate your feelings and help you with healthy coping strategies to deal with them.
It’s also helpful to have someone you can blurt your feelings out on. Sometimes we don’t feel comfortable telling the people closest to us everything we go through for fear of being annoying, whiny, and just generally that they won’t understand.
Look after yourselves my chronically ill friends! You don’t need to suffer alone 😘