I’m not exactly sure why I went back to therapy, really. My anxiety has been under control, no panic attacks since I can’t even remember when. I’ve been pretty stable, despite all that is going on. I told myself it was to stay ahead of the game, to ensure I keep my anxiety in check. I wanted to learn to make decisions without doubting every detail. I wanted to learn to be a self-advocate. To gain self-confidence. To be more assertive, especially with my doctors. I wanted to GAIN CONTROL of my life back. But to be truthful, I think I was depressed.
Well, I think I was depressed anyway. I’ve never been depressed before. Definitely pessimistic, but never depressed. From when my symptoms first came on, it was always suggested that anxiety and depression must be the cause of my abdominal pains. I know my body, maybe too well, and I knew it was not being caused mentally. It was absolutely, positively, without a doubt, not depression or anxiety. Although, after a few years and test after test coming back as “normal”, I thought well maybe I am crazy. Maybe this is all in my head. I do have stress, life is stressful. I must be making myself sick. But after a year of therapy, only talking about wedding planning and drama, my counselor didn’t really think I needed it anymore – unless, of course, I wanted to keep going. It was a long drive and life is busy, so I opted to stop treatment instead.
But fast forward to the last few weeks, here I am again. I just felt really defeated by everything going on. At first I felt very angry, like the kind of raging anger that rushes through every vein in your body kind of anger. Full of hate and spite. And then I got really sad. Why doesn’t anyone believe me? Why do I always have to prove how sick I really am. It’s visible now, I can’t hide it anymore, even if I wanted to. I feel like I’m literally going to die. I’m tired of fighting, the struggling, the judgement, and stress. I wanted to give up. To quit life. What was the point? What was I fighting for? Was it worth fighting for? Or living for? That’s when I knew it was time to get help.
I chose a place closer to home this time because driving all over the state for doctors appointments is getting to be enough and honestly, it’s hard to get very far from home with the current state of my illness. She’s a an actual doctor and has a great resume full of work in medical clinics and hospitals, and even works with law enforcement. As you can tell, I did a lot of googling before deciding to give her a call. Her resume, anyways, made her seem like she would be a good choice in understanding where I am coming from right now. She was able to get me an appointment within a couple days. Great. She takes my insurance. Perfect. Sounds too good to be true…
The first appointment was a get-to-know-you type deal. I filled out paperwork, which by now I can do with my eyes closed and left-handed, while holding my breath, upside down, and juggling fire. I really am that talented. But that’s another topic completely. Anyways, I felt like such a hot mess and was embarrassed of myself, considering this was our first encounter. I hadn’t eaten in days, I hadn’t slept much the night before due to pain, my coordination was off and I kept dropping things, my skin was flaring with this new rash that has decided to come and go from my face recently, and my thoughts were racing all over the place with all the things I was trying to get done that day. Not the first impression I wanted to make.
Usually, I like to try and look my best when first meeting a new doctor. Doctors are people, after all, and people judge you. So I typically try to put on my best face, neatly groomed, makeup on, fake smile on my face, positive attitude… I want to be taken seriously. However, that didn’t happen that day. It was more of: my body hurts too much to shower today. I can’t wear make-up because this rash is burning my face. My stomach is swollen and painful, so I put on baggy jeans and a t-shirt. I have large, dark bags under my eyes from lack of sleep and nutrition. My hair has decided it doesn’t want to lay flat on the side where I lost a giant patch of hair that is now growing back awkwardly. I can barely fathom putting on any other shoes then flip-flops. I’m chugging a venti Starbuck’s coffee to stay awake. I look like I’m on drugs. Definitely not how I wanted to present myself. She asks me if I’m nervous, I look nervous. I explain I’m just tired and not feeling well today. She’s quiet for a moment. Then came the usual questions.
- “So why are you here today?”
- “Well, I’ve been dealing with some health issues. Life’s been a little stressful lately. I just want to manage everything I’ve got going on. Maybe learn to have less guilt, be more assertive, and be less indecisive…”
Damn. I can tell she see’s through my generic answer. This lady is smart. I fidget in my chair some more, trying to find a position that doesn’t make me want to vomit. What am I doing? I feel stupid.
- “Tell me more about some of these health problems you have going on.”
- “Well, let’s see.” I list off symptoms: Chronic abdominal pain and nausea, I’m not digesting my food anymore, hypoxemia, livedo reticularis, nevus anemicus, IBS, alopecia, constipation/diarrhea, rectal bleeding, skin rashes, hives, pre-syncope, dysphagia, joint stiffness, asthma, allergies, abnormal menstruation, muscle spasms and twitching, abscesses, swollen lymph nodes, chronic infections, chronic fatigue, foot and height growth… “I’m currently undergoing testing and seeing specialists the last few weeks. It’s been crazy.”
- “How long have you been sick?”
- “I’ve had stomach trouble my whole life on and off for periods. Those periods usually didn’t last too long, maybe 6 months to a year. This current bout started 5 years ago, but just never went away. It just keeps getting worse. Only got extremely bad since right around Christmas, when I started not digesting my food and my hair started to fall out. It’s been downhill ever since.”
I’ve told this story a million times before — to every doctor, to friends, and to family members – and yet it still sounds so ridiculous in my head every time.
- “Nope, no answers yet.” “Yeah, all the tests are inconclusive or come back as normal.”
I feel crazy. I guess I’m in the right place. She asks about work, I fill her in on my short term disability denial. How I’m tired of always needing to prove that I am sick. She asks about my home life and marriage. My family. What I’m going to school for. Where I grew up. Etc. Etc. The appointment ran five minutes over. She walks me out, there’s another patient in the lobby waiting. I feel guilty for running late. She says that she’ll see me next week. I thank her for her time.
In my head, I know she think’s I’m a nutcase. How could she not? I SOUND like a nut job. She probably thinks it’s in all in my head too. But she was nice and pleasant about it, at least. And her office was clean and comforting. Maybe she can give me guidance on how to navigate through everything right now. And while I do talk about my illness a lot, considering I’m always at a doctor’s appointment or getting asked about it, it’s kinda nice to have an outside perspective. And if my superhuman powers, like the ones I used for filling out the medical paperwork, are causing all of these crazy symptoms, then she can help me with that too. Plus, I wrote a paper last semester on the prevalence of suicide rates in relation to living at high altitude and one section was on the general risk factor in committing suicide among individuals who are dealing with chronic illness. I figured it couldn’t hurt, I was being proactive. Especially considering a friend committed suicide this past Halloween with no warning signs. So I go to my second appointment.
I felt better prepared this time around. I’m not such a mess. She says I look better this week. I tell her I still feel terrible, but my mind seems to be in a better place. She asks me how things are going? I tell her about all the appointments I’ve attended this week, the endoscopes, the esophageal dilation, the new PCP appointment i had, and the fiasco with driving an hour and a half away to see the wrong kind of specialist my doctors referred me to for the Nutcracker Syndrome. I explain my usual day of coordinating my care, calling all over the state, scheduling this test or that appointment, dealing with insurance, and fighting with my current PCP to do anything. How I feel about not having a diagnosis. What I’ve experienced with my healthcare.
Oh, and I’m also taking the worst class. Statistics. Usually, I like school but this class is unstructured and a nightmare. I failed a test. But I’m grateful to have this opportunity. I can’t give up, not again. I wish I had more time so I could do better. I’m barely hanging on to a B.
I discuss the short term disability appeal I’m working on and talking to lawyers across the country who are interested in trying to help me win my case. But there’s the cost, not sure if it’s beneficial to hire one or not. Meeting one in Denver next week. I mention the struggles of not working right now. How could I though? Between all I’m doing, I’m barely keeping up. Plus, the symptoms have gotten worse so quickly. I don’t know when I should go back. I don’t have any answers yet, there’s still so many appointments. What if I am still too sick when I go back? I don’t want to lose my job. But there are bills to pay. It’s been almost two months without a paycheck. They offered accommodations that can’t help me in any way. I feel guilty for getting so sick so shortly after starting there, it’s only been 6 months. It’s always been manageable until now.
She is quiet for a moment and then she says she very sorry, she feels bad for me. I don’t want her to feel sorry for me. I don’t want anyone to feel sorry me. I just want people to listen. Simple.
She thinks that everything I’m dealing with right now, coming from the medical environment, is unacceptable.
- “How do you do this every day?”
- “I do it because I have to. There’s no choice. If I don’t, no one will. My symptoms will continue to get worse. Nobody will care or notice and I’ll be the one left to suffer the consequences. Plus, I deserve answers. I’ve been a good patient. I’ve been calm and respectful, even when I didn’t receive that in return. I NEED a diagnosis. I can’t accept that there’s no answers for me. My care has been negligent, at best. I’m fighting to get my life back. AND now it’s principal.”
- “How do you handle all this stress, when anyone else would have broken down by now? You seem to be handling everything really well, considering. Really strong.”
- “I’ve learned to function in chaos and I’ve been busy my whole life. That’s not the problem. Bad things happen. All the time. That’s normal. Me getting sick, isn’t really the issue either. It’s the lack of empathy, the lack of help and having to fight my way through this process when I shouldn’t have to. I’m on leave from work but I haven’t rested once. Instead of getting better, I’m getting worse because I’m constantly struggling with things beyond my control. Things that are unnecessary…”
We discuss the time in my life where I learned to live and embrace the chaos, but that’s a story for another time. I barely touched the surface of that part of my life. Her eyes widened, in shock. Again, she is quiet for a moment and starts to say something but stops. Our time was up anyway. She asks me if I want or need another appointment. I get the sense she was telling me I don’t really have to be in therapy, but she didn’t say it. I schedule for next week and thank her. As I leave, I feel validated. I do feel strong, considering. I’ve overcome a lot. I guess maybe I DO need therapy after all.
If you (or someone you know) are interested in talking with a therapist or counselor about the difficulties associated with living with a chronic or undiagnosed condition, you can visit the Better Help website to learn more on how to get started in online therapy.