To Anyone Losing Hope of Ever Finding Treatment for a Chronic Illness
If this were my last post, what would I want to say?
I have a special compassion for those of you who have heard “It’s stress” for whatever illness or disorder that is afflicting you. I hear you when you say you are weary and discouraged, frustrated and don’t know where to turn next. I don’t blame you one bit for wanting to take a break from fighting to find a doctor or specialist willing to help, and I know what it feels like to just want to give up trying altogether.
I was there, ready to give up. After years living with complex chronic illnesses, I was quite serious about saying I was only going to try this one more doctor and then that was it. I was so weary of the process of new patient forms, telling my story and symptoms all over again, only to be given little to no help at all, time and time again. Worse yet, to be left feeling like somehow it was my fault I was so sick, that my mind was messing with me, if I just really wanted to get well enough I could. It was four and a half years of this. I would take breaks, I sought alternative treatment, I had to wait months to be seen, and then would have to start all over again. In the meantime, my condition progressed and I got sicker and sicker, trapped by a body that was refusing to work like it should, tortured by pain and becoming more and more debilitated.
I hit rock bottom wondering how and why no one would give me the treatment I so desperately needed. Those of us with a stress (or some sort of psychogenic) diagnosis may find ourselves under-treated, untreated, or even mistreated. I had experienced them all. I’ve had specialists smile cheerfully and tell me that the good news is I didn’t have a degenerative disease. I know that is good news, but it didn’t negate how seriously I was suffering. I had them dismiss the idea that my breathing difficulties were anything to worry about. At first I was angry, encouraging my husband to sue said doctors if I were to die. But as time passed, the thought of dying from a complication from my disorders was a welcome thought. It would end my suffering and the burden of my family having to care for me.
What kept me going was my faith and family, and having access to the Internet where there were wonderful support groups. I discovered so many people who not only knew and understood my symptoms because they had them, too, but also knew of the weary journey of trying to find someone to diagnose and treat them. They kept cheering me on, reminding me just how many years and how many doctors it took before they were given the treatment they needed to help make their symptoms a little more bearable. My heart breaks for those who are suffering without any sort of support system, be it family, or even a group online. I know how all alone I felt before knowing such support systems existed. I think it would be safe to say I would have given up trying to get help much sooner if it weren’t for them.
If this were my last post I would say: If I gave up, I would have missed out.
I don’t ever want to forget what it was like… The pain, the physical misery, the feeling of hopelessness when no one was giving me a chance. I don’t want to forget how after years of research and other events happening I finally was able to start slowly getting some of my symptoms recognized as legitimate genetic conditions — that were discovered not to be caused by “stress” after all and responded to treatment. I don’t want to forget that even then, one of my most debilitating disorders was still considered “atypical” and could only be explained by “stress.”
Because that’s not where I am now. I finally have a doctor who is determined to do whatever it takes to help manage my symptoms and try to slow the progression of the disorder. He made sure to monitor my progress closely, having me come back frequently instead of saying “I’ll see you in six months,” or worse, completely dismissing me as some others had. He celebrated the victories, making a big deal over even the slightest hint of progress.
After a few months of my body adjusting to the side effects, and finally getting the dosage increased to where it needed to be, I finally am experiencing a measure of relief I had begun to think was never meant for me. More often than not, by the end of the day I simply marvel over all the things I had been able to do that day. It’s amazing. Absolutely amazing. Then I shake my head and think just how close I came to missing out on this. It’s been a new lease on life for sure.
No, it’s not a cure. It is likely my disorders will continue to progress and need additional treatment. It is possible that in the future I will again run into doctors who believe my condition is caused by psychological distress and thus not truly treatable with the very medications I am taking. It is scary and sad to see others go through having a doctor decide to take away their medications because they are not working well enough and therefore must not be helping. This is why I want to remember what I went through and the relief I am experiencing now.
If this were my last post, I would want to say to myself, don’t give up. To always remember how close I came to missing this chance for some relief and getting to spend more special moments with my children.
If this were my last post, I would want to say to anyone who has or is suffering with an illness or disorder and is feeling misunderstood and not getting the treatment needed, I understand what that is like. I finally found a doctor willing to help. I really hope you can, too! If you or someone you know are not a part of a support group, it might be worth checking around for one. There are so many support groups on Facebook and in other places.
If this were my last post, I would want to say thank you to everyone who has encouraged me along the way. There are so many of you and I am so very thankful.
This was written and published a year ago on my blog, and I happened to come across it today. It was the encouragement I needed to hear, and by sharing it again I hope it encourages others as well.
If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.
The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.
The Mighty is asking the following: Write a letter to yourself during a difficult time with your diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Lead photo source: Thinkstock Images
As a wife and mother of four beautiful children, Holly also knows the struggles of day-to-day living with chronic illness. As her movement disorder has progressed and her disability has increased, she’s finding it more and more important to find joy in the little things. Writing is her passion, first to express what is on her heart, but also to encourage others who are in pain and spread awareness of what it’s really like to live with a movement disorder, disability and chronic illness.
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