Since this is Mental Health Month….. makes me laugh, I thought I would utter my opinion on the lack of support for mental health through the process of Chronic Kidney Disease. This illness affects 14% of US adults, or 35 million people. You would think there would be a better mental health presence for support for people with this disease. There was a post by HealthUnlocked (32) May is Mental Health Awareness Month - Kidney Disease (healthunlocked.com) which offered great suggestions. I responded with a cryptic comment that it is not enough…. And it isn’t. When I was told that I had Stage 3b CKD, it was like someone gut punched me. There was no support back then, no forums that I knew of and no local support at all. I got mad and then I fought. And then I became an advocate. That helped me mentally so much.
I also used the Peer Mentor program through the National Kidney Foundation. NKF PEERs | National Kidney Foundation. At first, I was embarrassed and I thought how weak I was that I needed to talk to someone. I am a very tough broad and not used to needing help. But I had such a good experience, I paid it back and became a mentor myself once I was educated on my condition. Six years passed and I talked with many wonderful people. Each conversation gave me strength as I often learned from others information that was not forth coming from my medical team. The comfort of talking with someone who has walked the walk cannot be denied.
As my disease progressed, my preparation for dialysis did not. I was not ready. It took me over, slapped me down and put me in a position of feeling trapped. If anyone has studied trauma response or PTSD, I was experiencing all of it. The response from my clinic was to lecture me on attitude. They failed my pre-dialysis education by not offering it. I had slipped through the cracks on their transition of personnel. They screwed up. They were in a big hurry to get me in and then a big hurry to get me out on our own. I wasn’t ready for any of it. My direct medical team was great, but the administration is all about the money.
Sitting in the chair for the first time with no idea what was going to happen and then being hooked up was in no short term traumatic. Then, within three treatments, I was to start doing the hook ups with supervision. Are you kidding me? I won’t lie, I was pissed. I was mad about everything. I was mad I was not being prepared. I was mad that I started too early. I could have gone much longer without treatment but did not know that at the time. I felt coerced yet, there I was. I was mad that my kidneys were giving out even though I did EVERYTHING I was supposed to do to stop the decline.
So here I am seven months in. I am home, with my hubby getting through each HHD treatment, one day at a time. We have some had real disasters and some treatments with no alarms, although only four in all this time. I am no longer as angry. I am sad, and I admit it. I knew that I needed mental health support to get through this. I contacted NKF and got the BEST mentor in the world. She has helped so much. We are sisters from different mothers. We both look forward to our chats. I also just started working with a LMHC. I am going to have to pay for this directly but feel it is money well spent. This process of dealing with a chronic illness, especially ESRD is hard. We should not be left without mental health support. “There is no money for it.” Some insurances won’t cover it. Many, as I found out directly, mental counselors and psychiatrists do not accept Medicare. Lack of coverage puts many people who need this support unable to get it.
My newest “platform for reform” is to demand better mental health counseling for all. There is money. It just has to be demanded by patients. We need to change mental health stigma as something for only the weak. Everyone should have this support automatically. Peer mentors should be assigned to all patients when they start any dialysis. NO one knows better how it is than someone who sits in the chair. Patient support groups need to be developed locally so patients can physically get together to talk. This is especially needed for home dialysis patients. Currently I am working with my local center to get this going. Transplanted patients also need mental health counseling to deal with the aftereffects such as survivor guilt.
I’ll close with this fact: A US study showed that there were 24.2 suicides per 100,000 in dialysis patients, corresponding to an 84% increase in suicide risk compared to the general population; one fourth of suicides occurred within the first 3 months after beginning dialysis, while half occurred within the first year (Kurella et al., 2005). Mental health counseling is not a luxury. It is a necessity.
NKF PEERs | National Kidney Foundation kidney.org/peers
HealthUnlcoked healthunlocked.com/nkf-ckd/...