The Grief That Comes From a Life With Chronic Illnesses

Learning to manage all of the symptoms that accompany chronic illness is a momentous task, to say the least. Most of my issues stem from fibromyalgia, temporomandibular joint dysfunction dysfunction, and a handful of auto-immune disorders, including digestive ailments. I have a really good team of medical professionals to support and guide me in the management of all of the physical symptoms that accompany my conditions, and for that, I am forever grateful.

However, there’s a whole other layer to the management of my health – such as learning to cope with the emotional component of life with chronic illness. When I was diagnosed with my conditions a few years back, not one single medical professional addressed the emotional aspect of living with life-long symptoms. And even if they had talked to me about it, nothing would have prepared me for the heavy grief that accompanies this life.

Grief is probably the most painful emotion I have ever experienced. And the thing is, I’ve learned through my journey with chronic illness that grief is cyclic, rather than linear. I truly thought that once I reached a level of acceptance with my “new normal” that the nearly unbearable anguish would desist. This didn’t happen.

Lately I’m finding myself grieving my former ability to work full-time and be financially self-sufficient. I worked so hard in college so I could get a good job and sustain myself. I did this, until the sicknesses came to the point where I had to quit working full-time. The stress and heartache of being denied disability benefits (for the third time) is also weighing heavily on me. Now, I must wait well over a year, possibly two years, before I can appear before a judge and plead my case. No amount of preparation, had there been any, would have equipped me for the grueling and humbling task of petitioning for disability benefits, when all of me wishes I could return to full-time work and provide for myself, the way I used to.

There are many other aspects of life I grieve. I so desperately wish I could travel on my own, have more energy and resources to date and (hopefully) find a life partner, move out on my own again, eat the foods and desserts I used to enjoy, participate in athletics, and have a full social calendar. These things are not possible for me at this time, and the harsh reality is, they may never be.

I do my best to stay grateful, present, and positive. I have hope that medical breakthroughs may occur to help eradicate my diseases, or at least provide more symptom relief. I have hope that whenever I appear before the disability judge, he or she will see just how necessary disability benefits are for my life. I have hope that someday, I’ll be able to find a loving partner who supports me in my journey and lets me support them in theirs.

At the end of the day, I carry both hope and grief. On the better days, hope wins. Other times, I have to sit with the grief, knowing that eventually, the heaviest of that pain will pass.

Please be patient with your loved ones who experience chronic illnesses. I promise that they are also experiencing the pain that comes with the grief and loss that accompanies chronic illness. We are only human and the pain of regular bouts of sorrow can be an excruciatingly heavy load to bear. We cannot bear it alone; please, please, help us endure. We need you.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Chepko