For the Undiagnosed

Tips to Thrive When You Have an Undiagnosed Chronic Illness – Pain Resource
Photo Credit: painresource.com

One of the more frustrating tales you will hear from those in the chronically ill community is an all too common story of being undiagnosed, sometimes for years, sometimes forever. This leads to confusion regarding treatment plans and accusations of being overdramatic. Frustrated doctors might turn on their own patients and imply or even directly state that the problem is all in the head of the patient. Meanwhile, the one who is desperate for help is made to feel like he or she is the problem instead of someone with a legitimate medical problem.

I experienced a little of this at the beginning of my medical problems. After I injured both of my hips, I had no shortage of well-meaning people telling me I just had something out of alignment and just needed to see a chiropractor. I did eventually see one, who did not help at all. It amazed me how difficult it was for someone just to take my word for it that I had hurt my hips.

My GP didn’t help much either. When I tried to explain why I felt her theory did not match up with my experience, she became agitated and said, “Well, thankfully we have a great sport’s doctor right here in town.” She was dismissing me to go see him. So, I did. Long story short, he eventually suggested that it “might” be in my head and that seeing an orthopedic surgeon wouldn’t make any difference.

Well, I did see an orthopedic surgeon, thankfully. And then I saw another one, who eventually did surgery on both of my hips because of extensive injuries. I also saw a rheumatologist who gave me a diagnosis on the first visit. Since those early days, my experience with doctors has been mostly positive. Getting the right diagnosis was key to an understanding of what I had to deal with and allowed me to partner with my medical professionals with a successful plan of treatment.

It took me about a year and a half to go from the initial injury to diagnosis, but I know that I was lucky. And I have heard many of your stories about it taking years, even decades to get an accurate diagnosis. I can’t imagine how difficult that is. Some have had doctors give up on them leaving them desperate with no solutions on the horizon to even make their life liveable.

Recent conversations have reminded me of this struggle. I was also reminded by our unsuccessful attempts to diagnose a leak in our basement. One contractor and two plumbing companies have already tried. We still don’t know the problem, and it could turn into a financially ruinous situation. Sound familiar?

One day I was praying about our situation with the basement, I started thanking God that at least it wasn’t my body that we couldn’t understand why it was falling apart. And it reminded me of you…the undiagnosed.

There is no diminishing your struggle. I know you need answers. The only encouragement I can give you is to not give up. Meet with yet another doctor. Maybe the next one will finally commit to finding out what is wrong no matter what.

And find some people who will believe you. I will believe you. The good folks in the Broken and Mended ministry are committed to believing you, and even more…we will pray for you and not give up on you and your journey.

Take a little comfort today that God understands what is happening to you. Like the persistent widow (Lk. 18:1-8) of Jesus’ parable, keep petitioning the ruler of heaven and earth. The point of the parable is not to say that God is like the unrighteous judge, but rather that if even such a person will reward persistence, then how much more will our righteous God?

I can’t promise any answers or the timing of those answers, but I can promise that God will be with you no matter what is ahead. For that is his promise to all his disciples, “And behold, I am with you always, to the end of the age” (Matt. 28:20). Doctors, friends, and even family may give up on you and leave you, but not Jesus, not ever.

About David Heflin

I blog about topics related to the Christian faith and the struggle of chronic pain. I have ankylosing spondylitis and have dealt with chronic pain since 2011. I hope to provide support and community for those going along that same journey with me.
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1 Response to For the Undiagnosed

  1. These beautiful words are needed daily, and that verse is prayed throughout many long days and nights. Thank you for such a heartfilled message. This journey is too long for so many of us. Bless you.

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