When we are first diagnosed, it’s like any other illness, we muddle through those first days of being in shock, wondering what this means for our future, figuring out how and what to tell our loved ones, friends, co-workers.
It’s completely OVERWHELMING!!! Many illnesses and diseases are “known” to people, and when you mention it they immediately have at least some understanding of it, or they can google it and get good reliable information.
I don’t mean to make DISH sound worse than any other disease or illness, but some of the things that stand out about it are:
- Most people, including doctors, have never heard of it.
- The few docs that know anything about it are few and far between, and even with those it can take months of years to find one who REALLY gets it.
- The amount of erroneous information online about DISH, including sites you would think you could trust that say DISH creates no pain.
- The fact that we can look “normal” on the outside, but feel horrible in our bodies.
- One day we can do something, the next day we can’t do that very same thing – try explaining that to someone.
- There is no cure, no treatment. There are things that can help, but they are so “all over the place” as far as what works for one person and not another, that it can months or years to find what can help relieve symptoms. Sometimes nothing helps.
In the first few months after my diagnosis, most family/friends were supportive, engaged in learning at least something about my disease, and asked me frequently how I was doing. Little by little, as with most chronic illnesses, that support began to wane. I am NOT blaming anyone…..obviously they aren’t going to ask you every day for the rest of your life how you’re doing. That gets old for them AND for us.
But what I found in some people was disturbing…..they began to act as though my disease did not exist. Remember, we live with this EVERY SINGLE DAY. It doesn’t go away. It is now a part of who we are. Every day. It is ever present. So find a way to honor this, to understand what we need from you. This is where the rubber meets the road and where we find out who is TRULY engaged in their relationship with us. Being family/friends with us is not easy….it will require VAST amounts of patience and understanding. Not because of who we are, but because of what we live with. But I assure you, the rewards will be great.
People with DISH disease are: Compassionate, Bright, Interesting, Innovative, Trust Worthy, Courageous and Smart.
Immediately after our diagnosis
We will be in shock for a while – we may become distant, quiet, withdrawn as we grapple with this new information
- Ask us what you can do for us - if we ask for space, give us a few days but check in by text, email or mail a card – keep letting us know you are there for us
- Please, please, please do not say:
- “Well, at least it’s not cancer”
- “You look fine to me”
- “I looked online and it says DISH isn’t painful”
- “I’m sure you’ll be fine – you’re tough”
- “I know this doctor that you should see”
- What is helpful:
- “I’m here, whatever you need”
- “I’m so sorry you are dealing with this”
- “That sounds awful and we will get through this together”
- “You have a lot to digest and think about, and if I can help let me know”
- My dear friend of 30+ years, Amy, does not constantly ask me about how I’m doing – because she knows that things pretty much are what they are. BUT….she does periodically ask, and is very specific. She might say “Wendy, we haven’t talked about this in a while, but what’s happening with your DISH? Any more pain, or about the same?”. Just asking us means the world to us – it let’s us know that you remember that our lives are affected on a daily basis by DISH disease. She has also offered to run errands, get groceries, or just sit with me if I need it. Amy’s compassion and empathy towards me have often kept me from bottoming out during really hard times.
While we're figuring this out, going to doctors appts, physical therapy, etc. here's what you can do to help.....
It is mind numbing going through this stage. We will be like hound dogs on speed….searching every website for answers, talking to anyone who knows anything about DISH, emailing doctors, etc. We may go through many doctors before we find the right one. This is not always because we are looking for an answer we like (although that can be the case in the very beginning), but typically because many docs will say “yep, you have DISH, I can’t do anything for you”. I had that happen 7 different times over a 4 year period until I got to a physiatrist who said “yes, you have DISH, and there is no cure, but there are some treatments for pain and I can help you find ways to keep the mobility you have and to be comfortable”.
- Offer to help do research online
- Offer to go to doctor appointments with us
- Get groceries, run errands, babysit for our kids, bring a meal – our time will be largely tied up in the beginning trying to find information/answers/doctors to help us.
- Sit with us when we cry
- Take us out for coffee or a drink, to a park, somewhere where you can ask us how research and finding doctors is going.
- Please do not say:
- “I heard XXXX from someone about DISH”
- “Why don’t you try this doctor, or this medication, etc” (unless you truly know a doc who specializes in DISH this just adds more for us to think about)
- What is helpful:
- I loved when my friend Amy would say “Wendy, do you feel like talking about this today?” If I said yes we would talk about what was going on, but then we moved into other subjects too. Trust me, we don’t want to talk about this all the time either. But in the beginning we will……it’s new, it’s scary, we’re trying to figure it all out. We WILL find a new normal. You can be a huge part of us feeling like we still have a foundation.
- Amy would also ask me “Wendy, tell me more about this treatment you are going through” or “How is this new doctor helping you” – that made me feel so loved.
- “What can I do right now that would be most helpful to you”
- “Tell me more about DISH and what you’re finding out”
Our new normal
We will grieve. Make no mistake about it. We have lost most of our hopes and dreams and have to give up any notion of the life we thought we would lead. We will be angry, feel hopeless, be depressed, be anxious, be in denial. We may even act for a time like we were never diagnosed with DISH. Please just sit with us through these times. We WILL find a new normal. Albeit one that looks very different and you will have also grieve what you thought your friendship/family with us was going to look like.
- Encourage us to do things we are still good at and able to do
- Help us find new things (hobbies, work, etc) to replace the things we can no longer do
- Understand that one day we may be able to do something (go for a walk, hang out, go to a craft show, participate in some activity, etc) and the next day we may not be able to. Why? Because DISH is largely affected by our activity level – the more we do, the more we hurt. We choose that payoff sometimes……I am often willing to do something that I know will put me down for the next few days. My choice, and I don’t complain about it. But don’t question us as though we are “faking” it. Trust me, we want to be able to go go go just like you. But our bodies will not let us.
- Please do not say:
- “Well at least you have your wheelchair”
- “Hmmmmm….I just don’t understand why last week you could come over and now today you can’t”. Instead, say “I really want to understand how this works for you….tell me more”
- If you are planning an activity with friends that you know I cannot do, don’t hide it from us. That makes us feel so excluded. Instead, tell me about it and how you would love to invite me and ask if there’s a way I think I could participate. If I say I can’t, respect that and offer to text pictures so I can feel a part of things.
- “Your spouse does an awful lot for you”. Boy could I go on a rant about this one. Listen, do you not think we know ALL TOO WELL how much our spouse is doing for us? And we feel horrible about it almost every darn day. See below under Wonder & Reason for more on this subject.
- What is helpful:
- My friend Connie (the Thelma to my Louise) would often call and say “hey, we’re all gonna go do (think of something fun, maybe a little nuts) and I’d wonder to myself how that was going to work. And then she’d say “I already checked it out and they have wheelchair access”. OMW, I never felt more cared about than when someone would plan something with my disability in mind!!!!!!
- Ask us how our life has changed, what are new dreams are, how you can help make those happen.
- Be honest about how our diagnosis has affected you. Hearing from my friends how their heart hurt over what I was going through made me feel not so alone.
- My friend Mary, ever the mom, says to me before we leave to go somewhere “do you have your cane?”. They way she says it is so casual, and it makes me feel so understood because she realizes that DISH is a part of who I am. She makes me feel normal.
- My dear precious sister said to me one time “Wendy, I know that while you are smiling and trying to have a nice time with the family, underneath you are in physical pain and hurting. I never forget that.” What a gift. For someone to acknowledge that even when you’re just having a good old time, they know the truth behind that smile. Such love.
There are so many things you can do or say that will help us. Most of all, be open and honest. Don’t hide your feelings, don’t tip toe around ours. We have been dealt a tough blow, and one thing that will no longer work for us is anything fake. Tell us your thoughts/feelings, and ask to hear ours.
This next section I call Wonder & Reason. You may wonder about some things along the way, and there are reasons behind all of them. Hopefully this will help you better understand us:
Wonder: You may see me walk quickly and easily in my home or yours. The same day you may see me using a cane and walking tentatively, or even using my wheelchair. Why? How can that be?
Reason: In my home and yours I am on solid, level ground. I feel comfortable and know that I have safe footing. If I’m using my cane later it could be that I’m on unknown ground, uneven ground, tired from doing too much that day, inflammation flare-up due to various triggers, or just having more pain in general. I do get scared walking in an unknown or uneven area because I know if I fall, I will have a high probability of fracturing. It could mean severed nerves, tendons, muscles, and even paralysis. This is not an exaggeration or being dramatic, this is very typically what happens when a DISHie falls.
Wonder: Why were you able to go kayaking yesterday and then later in the afternoon or the next day you said you couldn’t even come to my house to hang out or go out to dinner? Kayaking takes a lot more effort than going to dinner or hanging out.
Reason: See Steve's Spoon Theory. - it is explained so well! I may have gone to bed early the night before and used little energy in the morning so that I COULD go kayaking. That afternoon or the next day the inflammation and/or pain from bone rubbing against tendons, nerves, muscles, etc caused so much pain, which in turn causes fatigue, so I just couldn’t do anything else. I couldn’t even dress myself, or make myself a sandwich. I didn’t even care to because the pain was so bad. I felt like throwing up. I cried. I prayed that God would take me. This is not drama, this is truly how I feel because I am in that much pain. It is with me all the time, just at different levels. AND I am really good at hiding it.
Wonder: You say you’re in so much pain, but you can only hide real pain for so long, and I don’t really see you looking like you’re in pain or saying much about it, and you’ve said you aren’t on opioids.
Reason: I want so badly to not have this disease. It has taken so much from me, my mobility, my ability, my identity, my fun, my strength, even my friends. I do everything I possibly can to avoid showing how I really feel because I know that will just drive even more people away. So I try to keep it to myself. I do show how I really feel to my spouse, closest friends, and family members who have made an effort to understand this disease and how it affects me. They see the days I end up on the floor crying because I just wanted to be able to put my underwear on by myself. I also know that being positive is good for me physically AND mentally, so every day I choose this. On the days when I can’t, I stay away from people and don’t let them see what’s really going on.
Wonder: You have given up or lost friends/family. Why?
Reason: We have very little physical or emotional energy to expend. (Go to the home page and click on “Steve” on the left hand side – read the Spoons story!!!!!) If there is any drama, tension, accusations of us faking it, us feeling like you don’t believe what we’re going through is that bad, trust me, we’re out. We can barely wrap our own head around this, let alone having to deal with the stress of others not believing us. In addition, DISH disease progresses more quickly when we are under stress. Our number one job is to minimize our stress, as much as possible. This does NOT mean we can’t or won’t navigate real life situations, such as work issues, marriage squabbles, differences with a friend. We can and should still do this, but if the other person is toxic or minimizes our real life experience, we have to move on.
I had dear friends for over 20 years, who at one point came right out and said I was “mental”. They said they were tired of my husband constantly “kissing my butt” (more on that in the next paragraph). Yes, they came right out and said that. They obviously chose to be in denial about what I was experiencing. So we moved on. We cannot have that toxicity in our lives.
Wonder: Your spouse/family/friends do a lot for you – isn’t that hard on them?
Reason: Again, we wish with everything in us we didn’t have this disease. And our spouses, friends, and family wish that too.
- Marriage - One of the things Ken (my AMAZING husband) and I talked about openly early on was this……he noticed that if we were sitting outside and I wanted something to drink, by the time I would get it and come back I was in such pain that the rest of the evening was difficult. He told me that he would rather GET me something to drink, or whatever I need, then to watch me suffer like that. I have days where I CAN do much for myself, but Ken has chosen to sacrifice, just like I have in other ways, to navigate this the best way we can. I am so incredibly blessed sometimes I cannot even fathom it. If our former friends think of that as “kissing my butt”, so be it. They will probably never know the joy of a spouse who loves you so much they are willing to sacrifice for you.
Ways that I give back to Ken is that I make sure he has plenty of time to do fun things that I can’t. Whether it’s a hike with a friend, a day away with the guys, going to a car show, etc. I send him on his way with a big smile. I also try to do little things like baking something he likes, buying him little things I know he’ll enjoy, and most of all being his best friend by listening to him and growing our marriage.
One of the greatest gifts Ken has given me is to constantly tell me how he loves and needs me just as much now as when I didn’t need a cane or a wheelchair. Our marriage is based on God, love, commitment, communication, fun, and memories. All of those are still present despite our physical circumstances.
- Friends/Family – My closest friends know that I was ALWAYS one to help with dishes after we would eat dinner together. Now, I can’t always do that. I might be sitting there chatting, laughing, having good conversation, but it may actually be a horrible pain/mobility day for me. My friend Connie (who doesn’t let me get away with crap) would come right out and ask “are you up for doing dishes or would you rather put the food in containers”. Man, no way will she let me get away with anything, not that I’m trying. But what it tells me is that she understands me but also wants to include me.
My sister will also say “Wen, can you do this or that, does that work for you”. She is ever present with me in the moments and being aware of my disability.
My mom and dad came over and planted flowers for me when they knew I couldn’t do it. They understood how important this was to me. How amazing is that? Filled my heart!