How to Cope When Your Spouse Has a Chronic Invisble Illness
13 Sep
Today is the first day of National Invisible Chronic Illness Awareness Week. I’ll be blogging about Invisible Chronic Illness all week. Click here for lots of great information and articles check.
My husband has Psoriatic Arthritis. This invisible illness is quite a challenge for us. Here are some ideas that may help you if your spouse has a chronic invisible illness.
1. Make sure you have a support system. For me, this is my family and a few close friends. You may want to utilize a Sunday School teacher, a counselor, or a support group for caregivers. Check out Rest Ministries Hope Keepers.
2. Take care of yourself. Exercise, eat right, have a hobby. The healthier you are spiritually, mentally, and physically, the better you will be able to help your spouse.
3. Educate yourself. Read everything the doctors gives you. Do research on the internet. Read up on your health insurance. Get to know your pharmacist and ask them questions about your spouse’s meds. Knowledge is power.
4. Remember it is okay to be sad. It is perfectly alright to feel upset about your situation sometimes. We are to weep with those who weep.
5. With chronic invisible illness, you and your spouse may need to get professional counseling to help you cope. Check out the Minirth Clinic or New Life Live for recommendations for Christian counselors.
6. Figure out what you CAN do. Maybe you and your spouse will never be able to go dancing again, but you could go to a concert. Maybe you’re like us, and you can’t go to the movies, but you can watch Netflix! Get a movie size candy from the grocery store and a bottle of Diet Coke. Make it fun.
7. Research alternative medicine, such as chiropractic care, massage therapy, diet and supplements. Even if there isn’t a cure for your spouse’s chronic illness, perhaps they can get some temporary relief from Epsom salts in a hot bath.
8. Talk to your spouse. Ask them what they’re thinking. Find out what their concerns are. Ask them how you can help. And a few weeks later, ask again. I’m always surprised at how my husband can change his mind about things from month to month.
9. Get life insurance. Who would care for your spouse if something were to happen to you?
10. Maybe your spouse can’t do everything they used to. But maybe they don’t mind if you still engage in those activities. Your spouse might love to take a nap while you’re wakeboarding.
Keep in mind, #2 doesn’t happen for me while David is having a flare up. We had pizza twice this weekend, and I certainly wasn’t exercising. And getting life insurance for myself is on my to-do list.
Love,
A Young Wife
There are also support groups ran by professional counselors for those who live with a person who has a chronic illness. This way you can share ideas, prayers, weep together, praise together, etc.
Dear Ashley: Thank you for talking with people about what it’s like for you and David to live with psoriatic arthritis. If there’s anything I can do to help you get info out, please feel free to give me a call at the National Psoriasis Foundation: 503-546-8413. My email is jprestonsmith@psoriasis.org.
Joel Preston Smith
Public Relations Manager
National Psoriasis Foundation
503-546-8413
http://www.psoriasis.org
I know I’m a little late in getting to this post (Just found your blog today!) but this list makes me cry. More importantly it makes me realize how hard life can be for the caregiver of someone sick. I’ve been sick for three and a half years now and even though I have a diagnosis (undifferentiated connective tissue disease) none of my doctors are willing to treat me, since we’re not sure which autoimmune disease I have yet. This list makes me realize that even though it’s hard on me, it’s hard on my loved ones too.
Thank you for reminding how very important my loved ones are!
So I was online searching for something that would help me cope with my husband’s illness. He has psoriasis over 90% of his body and psoriatic arthritis which has caused him to have to use a walker and has deformed his feet and ankles. He is only 42. My life consists of working, helping bathe, lotion and dress him and caring for all his needs. I don’t know how to help him, I don’t understand this hidden painful demon, and I find myself gretting angrier and angrier as time goes on. No one can pronounce his ailments much less understand them. Due to the skin flaking off at such a high rate, he doesn’t go in public anymore except to see the doctor. We have no health insurance anymore as he lost his job due to his illness, so we are living in the small dark town of wits end. He is depressed, I am angry and I don’t know where to go from here. Any one out there who can understand this?!?!? What is this disease?
Nean, thank you so much for commenting. It is a terrible disease. I also get angry at times. I wish I had some magic cure or trick that would make everything better. I want you to know I prayed for you and your husband today. Gentle hugs to you both. Have you visited Rest Ministries? I have been so blessed by Lisa Copen and her site. Check it out here http://restministries.com/
Nean, My heart goes out to you and your husband. I too have PsA and can somewhat understand what you are going through. I will keep both of you in my prayers.
I agree with Ashley – Rest Ministries is an excellent site, please do check them out if you haven’t already.
Nean,
I am the chronically ill one in the family…I have myasthenia gravis. But I have known Ashley for a while now, and to have an ill husband would be more than I could handle. She is a wonderful example of a caregiver and friend. I am so sorry you have to deal with this. I know how frustrating it can be to try to find people to help.
Rest Ministries is awesome. There are lots of people on there, caregivers and sickies like me : ) and it’s very encouraging. I don’t know what state you live in, but have you checked about filing for disability? That way you’d at least have income coming in. I will pray for you and your husband. Know from the “sick” spouse’s point of view that you are the hero. You are strong, and amazing, and we are so thankful that you are standing by our side. Without you we could not make it through life, and you are the most important person in our world. Not just because you take care of us, but because we love you.
Dear Nean,
That sounds so hard on you. I don’t think there is anything that is going to make this easy.
Of course if a treatment works someday or your husband has a remission, then you may get some break for a while from this disease.
But meanwhile, when we face lifelong illnesses like this, we need to use a support system to keep going when we “can’t take” any more. In many ways, you are your husband’s support system, but you need your own too.
I hope you’ll continue to reach out online and otherwise to let others know that you need help and a break from this unending burden. Please don’t feel guilty if you need to have someone else help him sometimes or take time for yourself.
Take care of yourself.
Bless you,
Kelly
Oh my goodness! There really are others out there! When I posted my message yesterday I was feeling really sorry for myself thinking, “say what you want to because no one really reads these things.” I wrote it as a sort of, I’m down today let me blow off steam, never dreaming I would have such positive feed back. Wow!
Asheley, thank you for posting this website… it is one of a kind and it offered me such hope to know that I am really not alone. I am looking into the links you have offered and I’m so grateful. God bless you.
Megan, thank you for the prayers. My husband’s name is Jason if you’d like to put a name with that much needed prayer. By now I am certain God knows his name very well.
I have never heard of PsA but I am on line looking it up and will put you in my thoughts and prayers as well.
Kerri, reading your post made me cry. I felt a little like you were an old friend sitting with me, crying with me, being strong for me and encouraging me. Thank you for that. Thank you taking the time to sit down and write a few words to a stranger that have filled me with hope and positive feelings about who I am and what I am doing. I could tell that you really do understand and the words you were able to say to me are the words that Jason can’t and it was nice to hear. Cleansing. I pray you are blessed according to your good deeds to others and while I don’t know what myasthenia gravis is, however, I am looking it up along with PsA to understand it, I pray God heals your body and restores your health.
Kelly, thanks for the word I’ve been afraid to use out loud, “guilt”. I have been so angry at myself, Jason and God. My guilt has made me have a really bad attitude lately. I wasn’t sure what was wrong with me or why I’ve been lashing out at strangers the way I have and when I saw the word “guilt” jump out from your message I had a name for the issue in my heart. I do plan to reach out and continue searching out a “place” of respite for my weariness, thank you.
I intend to be more positive ladies, and I usually am really happy and out-going in spite of the way I feel inside. People say I have that gift of comedy just lately I’ve not felt much like laughing. I’ve felt so alone. Seems like with all I do for Jason and our daughter, and working an hour and a half away from home from 6am – 6pm I guess I got burned out and no phone calls or emails from friends or family. Isn’t it funny how when you or your spouse gets an illness that no one understands, you never hear from the friends and family anymore? I guess they just don’t know what to say. So this post has been so uplifting for my heart. Ya’ll are my Chicken Soup for the Soul! lol lol I felt really stupid that I was so negative because I know God doesn’t give us more than we can bear and he never leaves us or forsakes us, even if I haven’t seemed like much of a Christian lately. >: / I always say that it could be worse.
Well, it is a beautiful North Carolina Saturday and laundry doesn’t do itself. Well, mine doesn’t.
Have a blessed day everyone. God Bless.
Nean, if you click on my name it will take you to my profile, and you can get my blog info and e-mail if you would like to keep in touch. Praying for you and Jason!
Please don’t feel bad, Nean! You weren’t whining or anything. I have those days myself, and I really appreciate talking to other people struggling with chronic illness.
You and your husband may have already tried everything, but if you’d like, I can put you in touch with some wonderful people at the National Psoriasis Foundation. They can help you find programs that offer free or reduced cost medications. Let me know if you’d like any additional information.