What Do You Need to Know About Your Therapist?

How Do I Cope With My Chronic Illness?

There is much debate in the therapy world about self-disclosure. What, if anything, should your therapist tell you about their life? Well, since I am about to tell you about my life, you can probably guess where I stand on this issue.

I like to guide my clients down a path for change to learn and practice how to cope with a chronic illness. I use what I have learned from my personal experiences as well as from my studies, research, and counseling practice. For this reason, I want to take the time today to tell you a little bit about my life with a chronic illness and how I have learned to cope with this invisible condition.

My chronic condition journey begins…

It was sixteen years ago. I remember it very clearly. The first time that I went to the doctor because my hands were weak and hurting me. Something did not feel right. I knew something was wrong. I ignored it until the fear drove me to my primary care doctor.

I was one of those people who did not like to admit something was wrong…let alone tell anyone about it. So, just going to the doctor felt very scary for me. 

I told the doctor that my hands were hurting me… a lot. She sent me for some lab work.  

The lab work came back with no clear diagnostic information. So, she sent me to a hand orthopedic doctor. I did a bunch of X-rays for him. The orthopedic doctor told me there was nothing he could do for me but that from the x-rays he could see rheumatoid arthritis. So, he sent me to a rheumatologist. 

My journey with doctors continued. I was starting to feel like all I did was go to doctors. I went to a rheumatologist who ran all kinds of tests on me with no clear results. He told me that I did not have rheumatoid arthritis and that for some reason I had early-onset osteoarthritis. He gave me a prescription for pain medication and sent me on my way.

I did not want pain medication.

I wanted an answer.

I wanted to know what was wrong with my body. 

  • Why did I feel tired all the time?
  • Why did my hands feel weak and hurt?
  • Why did my skin sometimes hurt to the touch?
  • What was happening to my body?

I felt discouraged with my medical journey. I did not have the time to wait endlessly in doctor waiting rooms. So what did I do? You guessed it! I stopped going to the doctor.

Maybe you, or someone you love, have gone through something similar. I found it quite stressful to meet with several different doctors in different specialties to ultimately feel like my symptoms were minimized to only be given medication (that I did not want) for pain. 

I have since learned that many people with invisible illnesses go through a similar experience.

  • Multiple doctor appointments
  • Meet with a variety of specialists
  • Painful testing
  • All kinds of bloodwork
  • Different types of imaging studies- which may be quite uncomfortable or hard to tolerate
  • Ongoing medical costs
  • Unwanted prescriptions from doctors

Finally…some answers (from a very unexpected place)

Let’s fast forward a few years later. I was having problems with my jaw. The dentist sent me to an oral surgeon. Yes! I went to another specialist.

After some x-rays, he walked into the exam room and told me “Your rheumatoid arthritis has eroded the joints in your jaw.” I told him that I don’t have RA. He said “Oh yes you do. I can see it on the x-rays.” And then he told me to find a better rheumatologist. Oh boy! Back on this road again!!!

So began my journey with my current rheumatologist. He ran more blood work. I did more X-rays. I had more imaging studies. After all that testing I went back to see him. He walked into the exam room and told me that I have rheumatoid arthritis. He talked about treatment options. Medication options. The preferred starting point. 

It was all really scary. I felt so alone and overwhelmed. I was terrified.

I broke down crying in his office. I was only 39 years old. I was not ready or prepared for this information. After all, the last rheumatologist said that I did not have RA. 

As a social worker, I had worked in many different settings and had seen what rheumatoid arthritis can do to a body. I envisioned myself in a wheelchair with my hands unusable. I remember crying the whole way home.

Diagnosis, relief, and anxiety

I finally had a diagnosis and a doctor who had a plan to help me. In some ways, I felt relief (as weird as that sounds!) I felt validated that I was not making up symptoms or problems. 

Maybe you know the relief when you can finally put a name to the symptoms? A sense of validation that you’re not going crazy and now you have proof that something is truly wrong?

Now I had answers. I now knew why my skin would hurt. I understood the reason behind my fatigue. I knew why I would run low fevers. I knew why it took sometimes half an hour in the morning before my hands stopped hurting.

I also developed anxiety, intense fear of my future, and a huge sense of sadness over what I thought I would be losing in my life. I would ruminate about the future and think about all the things that I would not be able to do. I would go over and over in my head too many fearful thoughts about this chronic condition I now know I had. I would endlessly worry about what might happen next to my body and my life.

  • Would these medications give me all the horrible side effects I read about and my doctor discussed with me? 
  • How can I afford all of this treatment and medications?
  • What if I lose my insurance?
  • What if my family and friends get tired of me because I can’t do the things they like to do?
  • How can I deal with this chronic illness for the rest of my life?
  • What if I can’t work? How will I support my family?

I felt so alone. I thought that no one else would understand. It felt like no one in my support community seemed to get it…

My fears

My symptoms

My fatigue

My pain (physical and emotional)

My endless worries about “what if…”

I felt like I was spending more and more time thinking about how this disease ruined my life and felt like I was all alone in the world dealing with it. 

Figuring out my medications 

Spending hours at doctor appointments

Pushing through work, family, and household responsibilities until I just couldn’t go anymore

Pretending like everything was ok... even though it was far from ok

I did not know what to do.

I was a mess on the inside. On the outside, I kept up my facade of being strong and pushing through it all. I didn’t feel like I could tell anyone about the impact of my illness on my life. I didn’t want to be a complainer. I didn’t want to push anyone away from me. And, being a therapist, I thought I had to look strong or clients wouldn’t trust me. 

So here I was. I was diagnosed with rheumatoid arthritis. I began taking medications that scared me. I cried almost every time I left the doctor’s office. I felt so scared of what the future might hold for my body with this disease.

  • I felt alone. 
  • I felt like I had no choice but to keep pushing through the pain and fatigue.
  •  I didn’t know anyone else who would get it.
  •  I was overwhelmed. Anxious. Sad about what I thought I had lost and what I would lose in the future. 
  • I was jealous of those healthy people who could do whatever they wanted to do.

Each time I noticed something new I couldn’t do or felt that horrible fatigue, I would think “I hate this disease!” I felt anger growing inside of me. I noticed my fears and anxiety were taking a terrible turn and I did not like it. Not only was I sick and tired of being sick and tired, but I knew I couldn’t continue down this emotional path. 

I knew that I needed to figure out what to do. I tried asking Dr. Google. But Dr. Google didn’t help. Like I always tell my clients, Dr. Google did not go to medical school! 

I joined online groups. I only sunk further down the rabbit hole when I read stories and posts about other people’s terrible experiences and journeys with their diseases. I read books. They didn’t help either. I tried ignoring it all. That certainly did NOT help.

But wait…I am a therapist who helps people with anxiety.

Then one day, I told myself, “Sara, you’re a licensed therapist with over 20 years of experience helping other people learn how to walk a different path to find relief and hope.” Why couldn’t I do the same for me?

So, I began to focus my life in a new direction. I began walking my path for change.

  • I worked on mindfulness
  • I meditated
  • I began gratitude journaling
  • I challenged my worrisome thoughts  
  • I started to find some relief from my anxiety and felt a sense of calm, hope, and control over my life.
  • I learned how to feel hope again.
  • I learned how to release my fears. 
  • I learned how to find the strength to wake up each day knowing that I have the tools to face it.
  • I stopped cycling in the negative thought loops of where my life could go with this disease. 
  • I stopped living in my fear of the future.
  • I found gratitude for my life.
  • I managed my stress better.

And then, I noticed another benefit that I was not expecting. As I found my place of inner peace, my pain levels were better. Not gone, but better. My energy improved. All around, I felt better. 

Don’t get me wrong. I have my pain days. I have my flare-ups. I have my fatigue. I still do not like having this disease. Sometimes the word “hate” still slips into my self-talk. But I learned how to move through my emotions and not live in that place anymore. I don’t get stuck on the dark path.

If you or someone you love would like to walk down your path for change with me and learn how to cope with a chronic illness, please feel free to contact me at 727-479-6041, email me at Sara@PathForChange.com, or contact me here.

I can guide you down the path to learn how to slow down your mind, feel hope for your future, and find the relief that comes with true inner peace. You don’t have to do this alone. Let’s go down this path together.