These are all TOTALLY normal
things to feel.
You will go through all the normal stages of grief, but don’t panic. Things WILL level out again and you will find firm ground. It just takes some time.
You will inevitably be looking for someone to tell you they can give you a pill, a treatment, or something that will get rid of this disease.
You will read what others say and decide that you are going to be the one to find someone who can fix this for you. That’s ok, and having that attitude will at least hopefully lead you to someone who can help you with Quality of Life (QOL). Searching is never in vain, and doing this is part of the denial stage of grief, where you just cannot believe you have a disease that is uncurable.
I hope the information that follows will help you move forward and take back some control!!!
Where can I find information?
Just Google “DISH Disease” and you’ll find a fair amount of information out there. Many websites that talk about DISH unfortunately mention that it is not typically painful. This can be very frustrating and confusing to those of us who DO suffer with pain. It’s also confusing when one website says DISH is rare, and yet another says it’s common. Here’s what I have discovered in reading information on many sites:
- DISH is a common skeletal condition for people older than 50
- The “rare” part comes in for those of us diagnosed under the age of 50, and especially if you are a female
- The other “rare” components are if you have DISH in areas other than the spine, and if you have osteophytes that affect your voice, swallowing, etc (I have this).
Some great websites for information:
- The Spine Community: DISH Back Pain Really Does Hurt- I’m listing this one first because it seems to be the most controversial piece for us DISHies who do have pain. I was so happy to find this article that said A recent study presented at the American College of Rheumatology 2017 Annual meeting suggests that many patients with DISH also experience significant pain!
- GARD – Genetic and Rare Diseases Information Center. I like the GARD website because I think it gives a good overview and “feels” most accurate in it’s description of DISH.
- Arthritis Foundation
- Research Information
What Kind of Doctor Should I see?
Since DISH is considered a type of arthritis you would typically be referred to a Rheumatologist. Some DISHies have found a Rheumatologist who is helpful to them, many have not. Personally, what I found was that most of them (at least the 4 that I saw) do not understand DISH (as many docs don’t) and they just wanted to see me yearly to say “how are you doing”. That was not helpful to me. I needed someone who would take some control and help me with Quality of Life.
Physiatrists are medical doctors who treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons. They are residency trained in physical medicine and rehabilitation. A physiatrist can diagnosis and treat sports and spine-related injuries as well as restore maximum function lost through injury, illness or disabling conditions. They can also treat pain syndromes.
My family doctor was the one who first suggested a physiatrist, and personally, this was the first doctor who seemed to understand and be focused on Quality of Life for me.
Interestingly enough, many DISHies have found that their family doctor is a great resource and can refer you to the right doctor for particular symptoms of DISH that need attention. For example, if you have problems swallowing due to osteophytes they can refer you to a gastroenterologist or a neurosurgeon. If you trust your primary care doc, don’t hesitate to use them as a resource to at least help coordinate your care.
Some DISHies have found a neurologist who is willing to see them for DISH, however, most will not as this is not a neurological disease. Neuro usually gets involved if you need surgery to remove osteophytes, etc.
What if I was Dual Diagnosed?
From what I have observed, most DISHies DO have dual diagnoses, which means that they have other conditions in addition to DISH. Some of those include:
This list is not all inclusive, nor does it indicate that you will end up with any of these things in addition to DISH.
It’s a list comprised of issues that other DISHies have frequently mentioned. Keep in mind, some of these may be related to DISH, some may not. Either way, you need to find a physician who can address QOL concerns about DISH, and then the right physicians for the other issues.
What treatments/meds/aids actually work?
Obviously this is all subjective. What works for one person may or may not work for another. This information is based on what other DISHies have said, and again, it may or may not work for you. The best thing you can do is work with your doctor and learn on your own to find what combination of things works for you
How do I explain this
to my family and friends?
Honestly, this was one of my greatest challenges, as it is for most DISHies. Living with an invisible disease is extremely trying, because others can’t see it or understand it. If you have a disease that everyone is familiar with, their first response is usually empathy, followed by asking what they can do to help, followed by some type of continued emotional support (at least this is what we hope for). With DISH, we can barely understand it most days, so how do we explain it to others to make it real for them
That is why I created the page for Family & Friends.
Explain the best you can to them, without trying to downplay it (for some reason many of us do this, and I’m guessing because it’s hard for us to even grasp what the heck is going on with our bodies!). Be honest, be up front, be graphic, and TELL THEM WHAT YOU NEED FROM THEM. Don’t assume they will know or even should know. They don’t.
If you are met with resistance, negativity, misunderstanding, denial, etc., then move on. That person is NOT one who will help you through this. More about that in the next section.
Knowing other people are out there who TRULY GET IT is half the battle won, because when you feel understood it gives you the motivation you need to keep going, to find your new purpose.
If you’ve never heard of the Spoon Theory, check it out on Steve’s website. This has helped me TREMENDOUSLY in explaining to friends/family why some days I can do some things, and other days I cannot. Our symptoms can fluctuate based on so many factors, and this helps others understand how much energy it can take just to get dressed some days.