When I was younger, so much younger than today,
I never needed anybody’s help in any way.
But now these days are gone, I’m not so self assured,
Now I find I’ve changed my mind and opened up the doors.*
Just a few short months ago we found ourselves members in a brand new community, the RAD community. Without even signing up or being asked we became a part of something that, given the choice, we would have excused ourselves from joining. But life moves on and this isn’t the first time we have faced disease or hardship in our lives or marriage. Kim, my wife, continued to do what she does: provide for her family, steel her chin, take the next step, and live her life to the fullest. I did what I do. I researched, became involved in the RAD community through social media, shared with Kim what I was learning, and helped her with the tasks she suddenly couldn’t do. Fortunate, I suppose, for us that we’ve walked this path before. Kim also suffers from severe fibromyalgia which she has had since 2007. As we have tried different meds, dealt with flares, and coped with challenges that autoimmune diseases can bring, we have had to learn how to make it work. And by “it”, I don’t just mean handling the disease. No, I mean marriage, love, communication, a partnership, mother and father, family, daily life, and more.
As we have embraced the RAD community and felt it’s warm arms gently squeeze us back, we have become aware that there are some within our community who struggle to find proper support. Unfortunately, they often struggle most of all to find care and understanding from their own spouses and families. As an active and involved caregiver, I have been asked by others in our community for suggestions or ideas on helping others with this specific problem. Here are some of my thoughts.
- Own your disease — You have a disease. A potentially serious disease. That is nothing to be ashamed about. People don’t usually hide their cancer, diabetes, or the fact that they may have an organ that is failing, yet in the autoimmune community there seems to be a sense of secrecy. In my opinion, some of that seems to come from the idea that “people can’t see it so I don’t want to talk about it.” Well people can’t see heart disease or breast cancer and yet we devote whole months to raising awareness about them. This isn’t like hiding the fact you once sprayed milk out of your nose all over a boy or girl you once dated. It’s not even like trying to hide pictures of yourself from high school. It is nothing to be embarrassed about. You didn’t ask for it and it’s not like you got a gift receipt with it. Unfortunately, it is now a part of you and your life. However, you get to decide what you are going to do with it. Will RAD be who you are, or will you choose to not let RAD define you. And if you are letting RAD control you by keeping it a secret, then it’s defining you.
- Be honest — Be honest with yourself. Be honest with your spouse. And be honest with your family, friends, and coworkers. And I mean all the way honest – not just a sliver of truth. If someone asks if you’re hurting, tell them. You don’t have to explain every minutia, but don’t shrug it off as if though it’s no big deal either. Be honest with your kids. Tell them what they need to know. Answer their questions when they ask. Don’t hide your RAD from them, or the reasons why you can’t do “that” activity any longer, or what the future may hold if they ask. Yes, sometimes the conversations will be hard, but what would you want to know if the roles were reversed?
- Communicate — This goes hand in hand with being honest. Tell your family members. Tell your children. Tell friends who you see while you’re out shopping. If they haven’t heard yet and ask, “How are you doing?” That’s your cue. Tell them. It doesn’t have to be a huge explanation and after a few conversations like this you will know exactly what to say and how much to say. This helps in several ways: it empowers you to own your disease, it gives you an opportunity to educate others, it raises awareness for RAD, and frequently, we learn from the person we are talking to about someone else who has RAD. Most people respond very appropriately and compassionately with a simple, “I’m sorry.” Some ask further questions and we answer them. Some get the “deer in the headlights” look and we simply change the conversation. And yes, there are some people — you know who they are — who we simply don’t tell because we don’t need to feed the gossip mill directly.
- Take them with you — If your spouse or a certain family member doesn’t understand the reality of your RAD, then arrange for them to go with you to your next rheumatologist appointment. There is something about being in a doctor’s office that lends a specific air of seriousness to what you are living with. Also, guess what? You can email your doctor and give them a heads up on the situation beforehand. We haven’t had to do it with Kim’s RAD or fibro, but we did do it with my dad’s Alzheimer’s. We knew we needed to take dad’s driving license away. So we simply emailed the doctor before his next appointment. As the doctor did a cognitive, and physical test on him, he told my dad he could no longer drive. My dad was mad, but he was mad at the doctor, not us, and it helps to have that authority behind us now when dad talks about driving again. Anyway, with a little bit of notice the doctor should be able to help with some RAD education.
- Understand — The anger, frustration, depression, and mixed emotions that you are feeling are often what your spouse or family members are feeling as well. For the ladies – I’m a guy. I know how most guys tick. We don’t communicate very well, we don’t share our emotions, and we like to tackle problems head on and fix them. Now we are being told that there is something that has been added to our marriage that we can’t fix and it causes all kind of mixed emotions for both of us. So please be patient with us. Some simple peacemaking guidelines help. When one of you snaps at the other, don’t retaliate by snapping back. Don’t add fuel to argument’s fire. Also, though your spouse or family member may not talk about it, don’t underestimate the emotional stress that RAD may be having on them. The silent worries, fears of the unknown, and concerns of the debilitating effects of RAD often weigh heavy on those around you. RAD can be a burden to bear for everyone.
- Embrace Flexibility — (Yeah, I threw the word flexible in there on purpose for a little RAD humor.) What did you expect when you got married? Wedded bliss forever! Life was grand, you were both in love, and you were going to live happily ever after doing what you have always done, right? Then a few years of life happened. No one lives happily ever after without learning how to embrace flexibility or change in their marriage. This is especially true when faced with a disease. Things we both liked to do years ago we can’t do anymore. That doesn’t stop us from living now. Our wants, our needs, and our desires change. That all becomes heightened when one or the other is diagnosed with a potentially life changing disease. So do we just throw in the towel? No, you need to learn how to change with it. Communicate. Find new interests together. Learn to live with each other in a new way.
- Downsize — Elimination. It’s relieving. Clear your calendar. Kim and I love getting together with friends, but it doesn’t happen as much as it used to. Yes, we miss our friends, but time demands on our schedule aren’t worth the stress on her and the symptoms that then follow. Remove yourself from volunteering. Eliminate an activity or two. Do what you can, but not more than you’re able, and be honest with yourself about what you’re able to do. You’ll find that most people are very understanding.
- Learn to compromise — Hopefully, with some honest open communication you can began to broach the subject of getting the help you need. One of the ways we have dealt with this is letting Kim do things that she can do that maybe I used to do around the house. In return I do things she can’t do. Even working together helps tremendously. Teamwork helps us both finish what we need to quickly and still gives us the relaxation time we need.
- PAUSE — This I borrowed from Peacemaker Ministries. As you look for understanding and help with RAD, try this approach with those who are struggling most to understand what you need. Before you talk with them,
- Prepare (pray, get the facts, seek godly counsel, develop options)
- Affirm relationships (show genuine concern and respect for others)
- Understand interests (identify others’ concerns, desires, needs, limitations, or fears)
- Search for creative solutions (prayerful brainstorming)
- Evaluate options objectively and reasonably (evaluate, don’t argue)
- Get help — When things aren’t working, talk to someone you can trust. Find a pastor, a priest, a counselor, your doctor, or maybe someone your spouse trusts. Go to them and be honest about how RAD has affected your life. Marriages and relationships are too important to not fight for them. Don’t ever let RAD take something from you without fighting.
This certainly isn’t an all encompassing post. The fact is, it doesn’t even touch the tip of the iceberg. So what have you found that works? How have you and your loved ones learned to live with RAD instead of letting it control you? And if you’re still struggling to start the conversation with someone, maybe it’s time to throw some music on and ask them to listen closely.
And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I’ve never done before.*
*lyrics taken from “Help” by The Beatles