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How can someone help their family and friends understand what they're going through?

  1. One of the most important thing you can do is tell them that you don’t like what is going on any more than they do. Along with AS comes fatigue, grumpiness, missed work, unmowed lawns, unwashed dishes, and unsatisfied spouses (if you catch my drift). AS takes away a lot, and often makes the patient feel they have lost value in their relationships. Tell them that you would love to be the person they want and need you to be, but it might not come exactly when they want it.
    The pain from AS is more powerful than most people could ever imagine, and it lasts forever and a day. So it the fatigue. In my personal experience, the best thing you can do is sit with your family and work out a plan. Explain to them that you will need to take breaks while doing chores. Tell your kids you can’t pick them up but seated hugs are really nice too. Make sure there is an understanding of what you can do and that what you do, might take a little bit longer.

    1. I know that some people want their privacy. I do too. But I also like it when the people closest to me, can hear it from the doctor. Sometimes hearing it from the experts legitimizes what is happening with you. My son has a good relationship with my doctors. He asks them questions and gets information about what is happening to me. Same with my mother and my spouse (when I had one). Once I took my grandma to my GI appointment. She was helping me around the house for a while, during a flare up and I thought it was important that she understand why I couldn't perform basic tasks and functions.

      We are on this journey together. And sometimes I get tired of having to explain and re-explain. Some people just need to hear it from the expert! Whatever gets the job done, I'm okay with that!
      (Team Member)

      1. I know knowing my symptoms feel I’ve had AS since my late 40’s or earlier. No one ever diagnosed my issues just gave me pain killers. So after seeing a Rheumatologist they immediately knew and blood work confirmed. So I freaked out and thought my life was over and retirement will be like my mom with all her ailments so no traveling or gardening. So now my situation with AS is my family just figure I’m Wonder Woman . I’m 62 and work through the pain and fatigue. I have always been the OCD mom with nothing to keep me down. I do all in the home, yard, and pool whatever needs to be done . I’ve enabled my family and now I need them to understand my life now. Which means I’m fatigued, never out of back pain even after surgery and an internal stimulator in my back. Don’t sleep well and leg cramps all the time. I just have an I don’t care about dishes and garbage and everything I used to love to do is not possible. I feel like I’m in a fog and can’t concentrate to do my crafts or anything I loved to do to relax me. The issue is my family has never had to do anything. So I still work and I need to quit or at least go part time but after 45 years of marriage my husband says I should work till he retires in Jan 2022. My money is free and clear so I save for our retirement home. I’m just struggling. But I keep going because I can’t just sit all day. I do what I can and I’m now on ENBREL 50 mg once a week injection. It does help but I have flare ups more often because I don’t listen to my body I keep pushing myself to keep moving. My hopes are my family will understand in the meantime my home is a mess, the pool gets cleaned once a week and I work. My doctor says I can work so it is what it is.

        1. just a thought.... when I was on humera for 4 months I was getting flairs once or twice a week!!!! Changed to remicade recently so far 1 flare every 4 to 4 weeks. I agree your doing wayyyy to much and that's definitely contributing but maybe your having the same problem as I did with the biologics?

      2. I just got diagnosed yesterday I am 54 and all I know in my late 30’s I started to hurt now and then and I have been told by friends, family, coworkers and you name it either; you are to young to feel

        1. I'm sorry to hear of your recent diagnosis. It certainly can be overwhelming and difficult for others to understand. Always know this community is here for you.
          Kindly, Doreen (Team Member)

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