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A Caregiver’s Side of RA

It’s 5am and I just got done breastfeeding our 8 month old for the third time this night. I lay my head down for a second and hear my 3 year old crying. He was woken up by his 4 year old sister turning their bedroom light because she just wet the bed. I calm him down and help her find fresh things hoping that by some miracle they will both go back to sleep.

When I get back to my bedroom, my husband’s alarm is going off, but he is just laying there moaning because he didn’t take ibuprofen last night and now he is in too much pain to roll over and turn the alarm off. He asks me with shame in his voice to turn it off for him. All the commotion has woken the baby which is followed by the other two kids coming in to see why baby is crying.

We move on to the living room to find some cartoons to watch. I bring my husband his phone so he can call in “sick” for work (again). In the kitchen I ignore the mountain of dishes no one felt like doing last night and inhale deeply the aroma of coffee dripping in the pot–another day of battling RA.
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When we were engaged eight years ago we had big dreams! We dreamed of backpacking adventures in the Rocky Mountains. We dreamed of having lots of kids and a decent house that we would spend weekends remodeling together as a hobby. We loved to fish, ride bikes, and workout together. I was impressed at his timing on his 5 mile runs. I joked that he was a workaholic because he was so dedicated to work he was one of the rare employees that always got the “perfect attendance” award.

Six weeks before the wedding he became very ill. He thought it was food poisoning or a really bad flu. He called me in the middle of the night panicking because he couldn’t get out of bed. After a few days the stomach issues subsided, but the joint swelling, pain, and fevers persisted. A month after our wedding he was diagnosed with juvenile RA. I cried when I read the warning label of the medicine they prescribed him.

Four months on the medicine—he was better! The nodules on his elbows disappeared and we even had to go get his wedding ring downsized because his knuckles were so small compared to how they use to be. We knew very little about RA so we assumed it was never RA to begin with and just some silly fluke that was gone now. (“Arthritis isn’t something that just comes and goes!”) He stopped seeing the doctor and taking the medicine.

For years he did really well. He would be extra tired or ache a lot at times, but we could dismiss it as just his job wearing him out. I’ve been living my dream of being a stay at home mom to three amazing children with plans to start working once the kids all start school. He worked so hard to get all his training and license to bring us where we are today.

The summer of 2012 we had a month full of life changing events. The stress was too much and he became very ill again. The same as before, the stomach issues went away but the intense pain and joint swelling stayed. His dad suggested we look into celiac disease since it runs in the family. I made an appointment with an “allergy specialist” with turned out to really be another rheumatologist. Blood test, sonogram, and xray all confirmed that he has “significantly high levels” of RA.

We still didn’t take it seriously. It wasn’t until I mentioned to my neighbor that my husband had arthritis and she replied “I hope he just has arthritis and not rheumatoid arthritis!” I couldn’t get those words out of my head. Why? What was so special about rheumatoid? So I did research and my heart was crushed as it all started to sink in.

My husband will turn 29 next month and instead of backpacking gear I’m wondering if he would agree to use a cane (“just around the house”) because I hate seeing him struggle and constantly calling out for me to assist him.

We’ve been through three doctors and 5 different medicines in the past year. We’ve tried the turmeric, celery seed, fish oil, pectin, bolage, BioFlex, and even changed to a totally low fat vegan diet. He’s found no relief and each week his hands look just a little more deformed than the one before.

I feel so guilty being a stay at home mom while he struggles so much to work full time. We make too much money to qualify for disability and he can’t keep up with the kids so him staying home is out of the question. There’s no way I could make enough to support us plus pay for childcare. So for now we are stuck.

Our closest family is an hour away and no one will listen when we try to explain how serious this is. We’ve been told we just need to be more positive. We aren’t trying to be negative, we are simply trying to face reality. They doubt this will ever really cripple him… I just want to cry because they don’t see that somedays he is crippled and that those “somedays” are happening a lot more frequent than ever before.

Before things got this bad I use to be the person that showed up with a basket of food or sent a card if I heard you were sick or down. I’d mow your grass, paint your kitchen, or babysit your kids for free if you asked. No one has offered help. I’m silently drowning alone while all my “friends” and neighbors stand by and shake their head in disappointment. I keep hoping that tomorrow we will wake up from this nightmare.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Maika
    5 years ago

    Abeeba, It is all so frustrating. I was diagnosed 9 years ago and it has been a struggle, one that most people don’t understand. I hope your partner experiences another remission and things get easier for you both. That said, I wanted to encourage you not to feel guilty, being a stay at home parent with 3 children is a big job, one that is very important to a family. I can’t speak for your husband, but for myself, being able to contribute to my family and pursue my own work is still really important. The time when I’m really useful at home or work makes my life worth living and positively impacts my pain. When I’m in ‘the zone’ at work or with my kids I forget that I’m hurting. It makes me feel useful too. That means the world when you feel you’ve lost so much to this disease. I hope that all make sense. I wish that our culture was better at reaching out and helping others. I hope you are getting the support you need. I find it hard to ask for and receive help. I’m working on that, so very slowly. Thank you for writing this and sharing your story!

  • Jen
    6 years ago

    Abeeba, I have been fighting this for a long time. I was finally diagnosed with RA in May of this year. I feel for you and your husband. This is a pretty awful disease, not for any sissy’s that’s for sure. I am 45, have two grown daughters and two beautiful grand daughters. There are days for sure that I have more pain then not, but I do try to keep up my spirits. If I have to lay in bed all day, then that’s what I do. My Dr. first started me on an anti-inflammatory and methotrexate. That didn’t do the trick, so we talked about a bio-logic. I am happy to say that my swelling is down, I can wear my wedding band once again. It was so tight that I couldn’t get it off. I had to use lotion and the freezer to help with the swelling. I was married in 2011 to a really great person. She has been my rock and continues. She knows that I’m hurting before I have a clue. Please find a Dr. that will work with you and not against you, will listen to how you and your husband feels. I will say prayers for your family. Don’t give up, you will find an easier time with the help from the right Dr. Good luck and feel free to post to me if you have any questions.

  • Andrew Lumpe, PhD moderator
    6 years ago

    Abeeba, my heart ached as I read your story from the caregiver’s point of view. RA can be such a nasty thing but your husband is so fortunate to have your support. My wife has become to best supporter and understands more than anyone what I go through. In fact, she is sometimes a better gauge of how I’m doing than myself (I stick my head in the sand). Hang in there and I hope and pray that he finds the right drug combination to keep the RA in check.

  • Tracy
    6 years ago

    Hi, I just felt compelled to tell you not to be afraid of the medication side effects listed. I am a registered nurse and was in complete denial when I first got this crappy disease two years ago.. I assumed my joints were swollen from 12 hour shifts once I was diagnosed I was absolutely shocked.. I was reluctant to start on those “scary” medications but I will tell you they have become a life saver, DMARDs w/ biologics / and yes sometimes still steroids along with Prilosec for the stomach.. it is a lot but taking Ibuprofen will tear up your husband’s stomach. Family didn’t understand and some of the more ignorant people still don’t but you can’t let that get you down. Make no mistake it is depressing to live with and love someone with a chronic disease but it can be better. I found a mayo clinic for wellness solutions DVD at the library with gentle yoga , 25 minutes a day, stretches all of the joints and helps with stiffness, electric blankets become your best friend. I still work as a nurse , three 12 hr shifts and it isn’t always easy but the medications are a God send. Enbrel has a support on its website and even if you have insurance it helps with your copay , gives you sharps boxes and alcohol swabs, Celebrex is another med I am on , expensive with insurance but they have a coupon online and more gentle on your stomach than Ibuprofen. God Bless your husband, you , and your family. I hope some of this gives you some relief. When I was first diagnosed a fellow nurse who had this disease sat me down and explained all of these meds, all of her treatments, warm pools , etc.. It helps to visit the chat groups and know you are not alone. I went Gluten free and this helped with my RA (a dentist noticed a thick coating on my tongue , knew about my RA, and suggested it ). Good Luck ! If I could go back to visit myself when I was first diagnosed I would have started meds faster the joint damage is ruthless when it is not controlled. Specialty shoes also help ( Walking Company).. God Bless You!

  • Cindy
    6 years ago

    I have had RA for over 10 years and have been taking antibiotics most of that time. I would recommend this treatment 100%. It is important to use the pelleted type and since there is only one brand of the pelleted Minocin in this country, I get mine from Canada. I have no pain! If I can answer any questions about this treatment I would be glad to do so. Diet helps me too, but I have never taken the big guns. There are doctors around the country who will give this, but not the regular rheumies. Would highly recommend looking into this..read all you can on the subject!

  • Beverly Stinson
    6 years ago

    Please hang in there. Depression is a huge enemy for you and your husband. Please, find a Rheumatologist that you trust and can talk to. I know the side effects of medication are scary, but the new biologics are very good. I have been on one for over ten years now, still walking, with a cane. Without it I would be in a wheelchair. Take advantage of whatever aids are available to get through the day, i.e., cane, scooter, splints, etc. RA is a part of your lives, it is not your husband or you, it is like the annoying guest who has moved in and never moves out, you learn to deal with it on a daily basis. Some days are worse than others. I was diagnosed at 34 with a 3 y/o at home; now I am 64. It is a battle, we haven’t won the war, but we can win some battles. Try to find a counselor who will help you deal with the depression and pain. Don’t hide the diagnosis, be honest with friends and family. Tell them to imagine having the worst case of flu every day of their life. That is RA. I pray for a cure in you and your husbands lifetime. Seek help, doctors, counselors, friends and family. My support system, my Dr’s, my husband of 35 years, my daughter, I thank God every day for them. Prayers for you, your husband, and children.

  • Mariah Z. Leach moderator
    6 years ago

    Hi Abeeba – Thank you so much for sharing your story. I was also diagnosed with RA as a young adult (I was 25) and went through my wedding, first pregnancy, and the birth of my son all while dealing with RA. I know that my diagnosis has affected my husband nearly as much as it has affected me, so I really appreciate you taking the time to share your perspective as a caregiver.

    I am so sorry to hear that your husband is struggling so much. It sounds like you have tried a lot of natural treatment options with little success. I hope that you are also working with a good rheumatologist and considering all the amazing medications that are out there. While I will admit that some of them come with scary side-effects, I can tell you from personal experience that RA medications – biologics like Enbrel or Remicade – can make a HUGE difference in quality of life, for someone with RA and their family!! So if your husband is really, really struggling he may need the help of a biologic medication or a DMARD (disease modifying anti-rheumatic drug). It may take a while to find one that works, but it will really make a difference when you do. And if you think your rheumatologist isn’t doing the right thing or listening to your concerns, it may be time to find a new one.

    I am also really glad that you are reaching out. Taking care of yourself and your own mental/physical/emotional health is so important too – especially since you have little ones who depend on you. As I mom I know this is easier said than done, but please try to remember to take care of yourself too! We are here for you! Hang in there!

  • Sue Ervin
    6 years ago

    It is very hard. When I was first diagnosed, I decided I wouldn’t let this thing get me down. I had 2 high school students, and a full time job. I went to all my kids activities, then pay the price later. My theory is get a good rheumatologist and use ever aid available; canes, splints etc. By using canes, splints, lift chairs, stool risers you save so much energy you can enjoy more of the things you like to do. I guess I am also not afraid to take pain meds needed, better living through medicine.
    It’s been 18 1/2 years since I was diagnosed, and everyday I have to remind myself to “fight” this beast, currently I’m really struggling. I only work 9 hours a week, 3 hrs at time, and that is becoming a challenge. It’s important to stay active, so even on the worst days I try to do something, even if it is walking across the room. I never thought I would ever have to be admitted to the hospital for pain control, but I have been.
    I guess what I’m saying we have to be tough and strong with RA, but don’t be too stubborn or vain or whatever to use whatever you need to lead a “normal” life.

  • Patty
    6 years ago

    I have been fighting this battle for over 15 yrs now. Don’t give up. I’ve been on almost all the meds and infusions that are out for RA.. Some worked but only for a limited time. I am now taking Simponi injections…knock on wood, which seem to be helping. It took 6 mths to reach its full potential. Everyday is a struggle and what hurts the most are my family and friends who just don’t understand and won’t take the time to learn about this life long disease. They all think I just have a couple of aches and pains….I wish 🙁 Hang in there. My heart goes out to you. I’ve been up since 5:30 just trying to deal with the pain and pacing. My appt is @ 9:30 and I’m still not ready. I will keep your Family and you in my prayers╬.If only people who say they care would take the time to understand all the complications people with RA go though…mentally and physically. It took years just to get on disability. They don’t even understand. I’m not collecting because of RA, I’m collecting because of depression and anxiety issues and PDSP. I take each day as it comes and some people are now just understanding that I can’t make some outings at the last minute and some still think I’m just plain rude for cancelling. I have no control of how I will feel an hour from now. I just try my best each day to cope and now try not to let others bring me down because of what they don’t understand ( their ignorance).. God Bless and take each day one hour at a time and count the blessings you do have ♥

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