Disclaimer: This gets a little personal for me. I’m not looking for pity, and I know that things could always be much worse. I’m not trying to get sympathy. I just want to share the reality of what life is like with a chronic illness.Depression is in my family, so I’m always very aware of my mental health state, and I knew that I was slipping down that slope and had to make a change. This is my way of dealing with how this disease has changed my life. I’m sharing it because I know there are others who struggle with it and I hope it can offer ways of coping for them.
Did you know that grieving over a chronic illness is a real thing?
I didn’t. I have experienced all of the emotions of grief, but I didn’t realize that it was actually a real thing that you go through with an autoimmune disease. My GI doctor seemed to shrug it off when I told her about my concerns. I was struggling with this so much over the past few weeks, and so relieved to find thousands of results on Google under “grieving a chronic illness.”
I was 24 when I was diagnosed with Ulcerative Colitis, that was just about 2 years ago. I did not know anyone with a chronic illness aside from one of my best friends who had lupus, and she didn’t really talk about how much it affected her. I knew nothing about how much my life was going to changed, and my doctor never mentioned anything to expect. Our only talks were about treatments and how many bowel movements I was having. No one talked about the emotional part of IBD. And it’s a huge part. I wish someone would have talked about it.
I’m talking about it today.
When I got my initial diagnosis, I was actually relieved. That was the first emotion I felt. I even remember smiling and saying “oh, okay.” I didn’t have cancer. It wasn’t until I got home and later that night looked up on the internet what the disease ulcerative colitis actually was that I realized what I had. And then I cried hysterically. Life would never be the same. Just like that.
There are many parts and pieces that are lost or changed when your life with a chronic illness begins. Working is hard for some, and the type of job you do might change. You might be absent from work on some days when you never used to call in before, or find that you aren’t able to keep up with those responsibilities that you used to handle with ease.
Relationships that aren’t built to handle this type of challenge may become strained as some do not understand what you are going through. Some relationships may dissolve completely (you don’t need those people anyway).
Grief can come at you in all forms as the disease changes you mentally, physically, spiritually and fully. With my IBD, every single day brings a different opportunity, and sometimes a different barrier. My identity of who I was pre IBD is gone. I still have bits and pieces, but it came at such a transitional part in my life where I was already trying to define myself, I absolutely had no idea who i was anymore or what I was going to be. All I knew was that I was sick, and it hurt, and I lost all sense of what life was going to be.
Depression is a slippery slope for many people with autoimmune diseases. For some, the grief cycle is continuous. Each new loss the disease brings can trigger what happened in the past. For others, seeing some patients thrive and be healthy can trigger jealousy and longing for the past healthy days. We may be truly happy for the person who is having the time of their life, but it may make us yearn for the days when we were healthy and naive.
Sometimes, we are so ill, it is impossible for us to grieve what losses are occurring. It’s important that we set aside time to mourn what has been stolen, whether that be your pre IBD identity, your colon, your relationships, your finances, what ever it is. It’s SO important to go through that cycle, deal with the emotions, and let it go. Otherwise, you’re stuck. At least, that’s how I’ve been feeling.
When I had my diagnosis, and knew what it was through my own research, I felt sad, but I didn’t really know how much the disease was going to affect my life. It was hard, but I was getting through it and to be honest, life hadn’t really changed all that much. Fast forward a year, and I’m in the hospital getting a blood transfusion and I’m the sickest person the nurse has ever seen, and she had been a nurse for over 20 years.
I was too sick to grieve. I was scared. I wanted my life back. I was mad. I was frustrated. But I was hopeful. And I eventually got out and was able to start slowly healing and getting some strength back. I didn’t really realize that I had said goodbye to pre-IBD me, and she wasn’t coming back. Pre-IBD me is a memory. She is in the past. I have bits and pieces of her in my heart, but I’m not the same. So, who am I? I’ve been having to relearn a lot of things.
Fast forward to now.
I went on vacation this year, somehow expecting to be vacationing from my disease. Earth to Jacklyn, you can’t just send your disease to outer-space for a couple weeks and bring it back when you get home.
That realization triggered a lot of emotions that I hadn’t dealt with previously. I have to take this disease with me wherever I go from. now. on. Life as I knew it for 24 years is not coming back. I can hope and wish and pray, but it’s just not. For the rest of my life, until they find a cure, I will carry this disease with me.
What I do have, however, is a great life. I just couldn’t see it recently with all the emotional baggage falling over my eyes.
I decided this weekend that it was time to seriously grieve my losses, and then let them go. I am so tired of being triggered into a dark cloud of emotion every single time this disease defeats me. I have a very blessed life, and I want to be able to enjoy it with fresh eyes and stop yearning for the way it was previously. I did a lot of research and spoke with folks in my IBD community and found that many of them are also in this cycle of grief, being set off with different triggers as the disease changes and you again have to adapt and change what life was.
Now, before you read on, I want to make sure you know that I am aware this cannot be fixed in a weekend. But I want to share with you the beginning of my letting go (que the music), and I think I’m off to a good start.
My fiance is out-of-town this weekend, so I had the house to myself and was free to mourn my previous life. I did a lot of research, and decided on what strategies I was going to take to start moving on with my IBD life.
I decided to have a funeral for my old life.
I started by writing a really long letter about all of the great things I did pre diagnosis. I wrote in my journal for hours about what I loved about that life. And then I said goodbye to it. I folded up the letter and put it away. I cried. I took a lot of deep breaths and focused as much as I could on letting go of that life.
And then I wrote another letter. This time it was acknowledging all the things I was grateful for in my life right now.
I made my mantra Have presence in the present. Let it Go. And with each breath during my meditation I recited it. I physically practiced it during my yoga session. I wrote it down on a sticky note and stuck it on my door frame. I lit Rose incense after learning that the scent helps release pent-up emotions. But mostly, I spent the weekend doing a ton of things I enjoyed doing. I made lists of things I was happy about. Things I dream about. I played music that made me happy. Music that made me sad. I put on my favorite shirt. I laughed. I rearranged the furniture. I got rid of clothes that no longer fit. I put together a box of things to get rid of. I counted my blessings. I prayed. I watched a couple of sermons. I practiced putting my expectations in a box so I didn’t have to dwell on them.
And now I’m here. Telling you about it. And I’m going to keep practicing letting go every single day until this longing for my old life moves out. I’m cleaning out what was to make room for what can be. And I know that there can be a lot of good, even with IBD. I truly think that I won’t be able to see the good in the present if I don’t let go of what once was and look to what is good now.
If you’re looking to make the move for yourself, and have some time and space to do it, there are some links at the end of this post to some of the research that I found to be most helpful. There’s a lot more out there, so please find what fits for you and make sure to consult your support group if you don’t feel like you can get through this yourself. I’m not a doctor or a counselor, but I’m here to listen if you need it.
I’m just trying to find what works best for me in living with this disease, and my hope is that you can too.