First Person: DXed, Now What?
By Neal Crowell
It took me nearly 5 years to get a diagnosis of CFS. I went through them all: doctors that told me I needed to see a psychiatrist, doctors that told me there was nothing wrong with me, doctors that just shook their head in bewilderment. So what changed it? Having nearly run out of savings, I went online and tried contacting a few groups after I realized that I had something that sounded so silly yet I seemed to fit the criteria of "chronic fatigue syndrome". When I called the National CFIDS Foundation, I got a recording just as I did with many other groups that offered to help. The difference was that they returned the call within hours, listened patiently as I explained probably what they hear on a daily basis, and they offered suggestions I had not gotten in all these years and even suggested where I could get a diagnosis. I followed their suggestions and ended up with a real diagnosis from the well known Cleveland Clinic that my primary care not only respected but was willing to work with. He read the material that your foundation had sent me and is becoming well educated about a disease that he had no idea even existed. But now what?
I turned to the internet once again. I found this journey that I've been on has at least another five stages once a patient gets a diagnosis. The first stage is DENIAL. Well, I was in that stage long before I found myself severe enough to have to get a diagnosis. I was at the second stage of ANGER but beyond that one, too as I'd been having nearly 5 years of anger without having a diagnosis. Sure, I was angry that whatever this dreaded thing was, it was putting an end to my life as I knew it. It already had made me keeping on with my job an impossibility and had already isolated me from my coworkers and most of my friends. Even members of my small family had decided I must be having a mental breakdown of some sort. I found that specialists on the internet preached that I should try to channel my anger into something better. Well, I had. I was determined to get a diagnosis but, when I did, the diagnosis didn't end that anger. Why hadn't that kid I grew up with who was such a bully and picked on every other kid smaller than him a victim of this? Why did it hit me and not others who didn't seem to care as much as I did about others? I knew I wasn't making up all the symptoms and I knew when new symptoms arrived that they weren't part of my imagination. I also found how quickly my estimation of medical professionals plummented when they were faced with something they weren't familiar with. Anger became a part of my life but it was warranted.
So I skipped over the first two phases having already experienced them before the diagnosis was made and found that I'd already been in the third stage as well as the fourth. The third stage was BARGAINING and, after all these years, I knew that was kind of pointless. I already knew something had invaded my body and I wasn't blaming it on not being good enough or it being payback of some kind for some transgression that I didn't recall. The fouth stage is DEPRESSION and it was another area that I had already experienced. In fact, every time that a medical professional brushed me off, gave me that nod with their eyebrows raised, or suggested that I see a mental health professional, it was depressing. From having this for at least 5 years, I already knew that there were a couple of good days interspersed with the bad days even if they were infrequent. I had already wondered how I could face living with like this for years or even for the time being. I already knew that there may be some things that would help a little bit but I knew better than to imagine that there was a magic herb or pill around that would turn around this nightmare. The depression stage that I had was warranted but, unlike primary depression, couldn't be helped by a pill.
The final stage, I found, was ACCEPTANCE and the suggestion was to reevaluate one's life. Well, I already know that I had to accept my illness before I had a diagnosis. I already understood only too well how limited my energy was and how I would have a bad payback for whenever I tried to attempt anything I used to be able to do. But the experts who talked about these stages wanted me to focus on what was really important to me so I could find out that my life is still rewarding and purposeful even with this illness. That way, they claimed that I could manage my illness instead of my illness managing me. Sorry, but that's hogwash! I accept that I'm sick. I accept that it is depressing as can be to be sick. I accept that others can't handle it and have deleted my name from their lives. But I'm still angry that this is my lot in life. I'm still angry that family members were and are so quick to write me off as just crazy. I'm often still denying that this will last the rest of my life. And I'm still fearful about the future and what it holds.
All the stages are still with me. I've begun working with an attorney to get on social security disability. I've even found out that, despite it being years since I had a job, I could also be eligible for long term disability since I didn't have a correct diagnosis until recently. I know it's not an easy road to travel and I know that the articles about the stages of any illness and the grief somebody feels about their former lives being obliterated are only too real. I had a minor in psychology when I was in school. I was wondering, lately, if that would be a profession that I could enter since it seems that all of it is a lot of basic knowledge interlaced with fancy words. The help I needed didn't come from a mental health expert. It came from a group of patients that knew how little help there is out there and were willing to volunteer what limited energy they had to reach out and help others. They channel their denial, their anger, their fears, their depression and their acceptance. It turns out that they were the biggest help to me when I was desperately adrift and in need. So my limited energy, today, was spent on writing this. It's my way of saying thanks!
Neal Crowell is from Tennessee.
The National CFIDS Foundation* 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606