Searching for Answers: My Chronic Illness Journey

It's really easy to compare in chronic illness. To compare to those worse off and think, "My story hasn't been that bad. I can't complain." Or to look to healthy people and think, "It looks like I'm trying to force sympathy." Because of this, it's quite challenging to know if and how to share your story of chronic illness.

I've thought about sharing a little of my story for a while. This is very much an overarching view, it really can't quite contain how incredibly difficult the last couple years have been. But my desire isn't to mope in self-pity or to make you feel sorry for me, but rather to give an honest glimpse into my chronic illness journey (which is not over yet!).

As typical for chronic illness patients, my symptoms came on somewhat gradually over the last 5 years, and for a few years I explained them away as minor issues or stress/circumstantially caused. Though by definition chronic illness is anything that lasts more than 3 months, it took over a year of debilitating chronic pain, fatigue, and worsening symptoms before I began to admit, “I have chronic illness.”

Initially I expected a doctor's appointment to solve my problem. I laugh at my naivety now. After a sudden out-of-state move I spent 6 months on my bed with fatigue. I still thought I was just having thyroid issues, so I anticipated thyroid medication would relieve my symptoms. I scheduled a doctor's appointment, and then pursued and began a year long internship. However, I learned that just by trying to keep up with “normal” life, I was getting worse, not better. I became more vigilant with research, appointments, and supplements, desperately searching for a root answer.

It took nearly 2 years of appointments to get a root diagnosis, way longer than I ever expected. Yes, I got “diagnoses" from several doctors (IBS, Fibromyalgia, hypothyroidism, MTHFR, autoimmune issues, and more) but nothing seemed to really describe all my symptoms. I endured 3 nasty rounds of treatment for SIBO (gut infection with a high relapse rate), an antibiotic for a parasite, and long-term herbal protocol + special diet for various gut infections before I began to see gut improvement. I also began an immune boosting and detox protocol (supplements and diet), with the direction of my doctor, to address my autoimmune dysfunction.

While my gut issues began to see improvement, my pain and fatigue did not. In fact, some of my lab results were getting worse despite many months of treatment! At this point, my doctor decided to re-test me for Lyme disease and co-infections.

I had been tested for Lyme a year before, and it came out indeterminate. A previous doctor said she didn’t know if I had it or not, and wasn’t really sure what to do next. I was immensely discouraged because I really wanted an answer! Subsequently, I was quite fearful about re-testing for Lyme. If I had it, I knew the treatment regiment would be intensely difficult and long. But if I didn’t, was I making all this up? What if my doctor didn’t believe me? What if my quality of life stayed like this for another 10 years?

By God’s grace, I did finally get an answer. Recently I was diagnosed not only with Lyme disease, but 5 other major infections (frequently called co-infections)! No wonder I wasn’t seeing improvement.

It is encouraging to have answers and direction. But in this long process, God has been revealing where I place my hope. I've learned that it's not wrong to search and pray for medical answers. It's good to hope and not give up. But that is not where my ultimate hope is found. Hope is not in a diagnosis or a cure. Hope is found in my God, who walks with me no matter what I face.

My story isn’t over. I’m not healed yet. I don't know what upcoming months of treatment will be like, and how long it will take before I begin to see improvement. There are days I fear what the future may hold. But I have a faithful God who has been faithful to lead me thus far, and will continue to be faithful, whatever comes my way.

If you are facing the many unknowns of chronic illness, my heart goes out to you. It is excruciatingly hard. But don't lose heart! If you're a believer in Christ, God walks with you, giving hope in the darkest moments and fresh grace for each day.