Living With MDS: The Value Of A Good Psychiatrist
Published: Jun 7, 2012 12:27 pm
When I was a child, I used to spend my time after school in my mother’s lab. I enjoyed seeing her work and I could walk there from my school. The only unsettling thing about getting to her lab was that it was at the end of the cancer ward.
In the 1960s, the typical ward had multiple large open rooms with four, six, or eight beds. The ward’s smells and sounds colored my notion of what “chemotherapy” might look like.
When you have cancer, you imagine what treatment for your disease may hold, you worry about potential pain. Physical pain and the emotional pain that accompanies life threatening illness are difficult emotions to keep in their place.
When you become ill, you mourn the healthy person you used to be. This combination of worry and loss can lead to depression. With myelodysplastic syndromes (MDS), you add the profound fatigue that is normally a part of the disease.
In the first two years of my illness, I would get up, go to work, pick up my children, throw a meal on the table, and go to bed at five o’clock in the afternoon. A couple of hours later, I would wake up, put my children to bed, and go back to sleep. Over time, the number of days that I used this solution to dealing with fatigue diminished. Was I less fatigued? No, I think that I just adapted.
By the third year of my illness, a deep depression descended on me. This was not my first depression so I recognized the symptoms. I knew that the depression would eventually lift on its own, but I felt that in the long run I could probably use some help managing the emotional landscape of cancer.
The knowledge that the precipitating problem wasn’t going away also helped me to make the decision to get help. The psychiatrist I found worked with cancer patients only and was on the faculty of the hospital where my hematologist works.
My therapist is a kind person with a broad understanding of the emotional issues that arise during cancer care. During the 15 years that he has been my therapist, we have only had a year or so of weekly meetings; occasionally, I have seen him monthly, but mostly I have seen him every six months or every year.
This arrangement has worked out well for me and for my family, particularly when I was in the hospital having my bone marrow transplant.
He was available to see me and interpret my needs to my other doctors. He also knew me well enough to explain those needs. He was a respected part of the team. He has also been a help to me as I have gone through complications from the bone marrow transplant, particularly with medication management.
Over the years, I have developed good mental health habits with the help of my psychiatrist.
As a teenager, I found out that aerobic exercise (when you get out of breath) lengthens the time between depressions and shortens their durations. I rarely have a single glass of wine, because there is a statistical correlation between alcohol consumption and MDS progression from a chronic condition to an acute one. I maintain a consistent sleep schedule; I go to bed around the same time and get up around the same time all week. I maintain a healthy weight with normal nutrition and healthy eating habits. I enjoy a small group of close friends.
Grief, sorrow, anger, and anxiety are a natural part of being a cancer patient. We live through the emotions, and they pass. Depression also passes. Untreated, it will lift in one to two years, and in its wake it often leaves many mangled relationships.
Most people who experience depression will only experience it once in their life. In cancer patients and their caregivers, depression is rarely treated in part because most patients become depressed after they have been treated. I think with MDS that might be a bit different because many people are living through a chronic phase on their way to an acute more active treatment phase.
Unfortunately, pain is much better managed by most cancer centers these days than depression. I was lucky that I knew what depression was and the damage it can do.
It made the decision to get help much easier. I would like to add that I doubt it can do harm to try out getting that type of help.
For those of you who are among the faithful, I would also add that sometimes a priest, rabbi, iman, or chaplain can serve the same role as a therapist. However, because they are not physicians, they can’t prescribe medications and they may also not always be viewed by the other doctors as part of the team.
I would like to point out that a psychiatrist does not have to take the place of a spiritual advisor, and the two are not mutually exclusive. I hope you will find the courage to seek help when you need it.
In my next column, I will write about changing the impact of fatigue on your wellbeing.
- Caring For A Loved One With Myelodysplastic Syndromes – Part 3: Loss, Grief, And Bereavement
- Caring For A Loved One With Myelodysplastic Syndromes – Part 1: Making Your Own Health A Priority
- Patients With Myelodysplastic Syndromes Prefer To Be Transfusion-Independent
- Serum Albumin Levels After Stem Cell Transplantation May Be A Good Prognostic Factor For MDS Patients
- Anti-Thymocyte Globulin Prior To Transplantation May Improve Prognosis Of MDS Patients (ASCO 2012)