No One Gets It...

By healthyas

2 min read

So right now I am definitely (hopefully) in the peak of my condition. My AS has been super intense with flares and inflammation after the birth of my second son. I wasn’t sleeping, was extremely irritated and snappy constantly, plus moving with a lot of pain and limitation.

Then comes a diagnoses of a severe osteoporosis (I’m only 38), and the very scary and serious tone from every doctor I visit, on the importance of treating this now and avoiding further fractures (I’ve - cluelessly- got two spinal fractures).

Treatments and side effects

And when I thought injecting Humira was a big deal, I have to do daily injections of Forteo, a medication to treat the osteoporosis. On top of this, I have very serious damage in my hips (osteoarthritis?), and am limping on/off. I need to walk and exercise, build muscle tone and bone mass. But I also need to rest and stretch, it may take me minutes to get up from where I am sitting.

All of this happening while caring for a six year old and a fifteen month old toddler. The fear of the medication, the constant fatigue due to being on a low starch diet, and pressure to gain weight and mass.

Nobody understands

And yet, no one gets it. No one cares maybe? I was told by the doctor I should consider hip replacement soon, within the next year. And when I share this with a close family member she says “oh well, maybe that’s a good thing, given you won’t have to take the medication any longer”. No, a hip replacement has nothing to do with the use of biologics. And no, its far from trivial to do this surgery, it IS a big deal.

So I’m left wondering, is it just me that find that no one really gets it or cares? If I had someone close accumulating conditions like me, undergoing such an intensive moment in life, I’d do my research. I’d be there with the right arguments and questions and thoughts. Or is that too much to ask?

How do others support you?

I wonder how it is with others, if you get not only the emotional support, but if you can count on your spouses and family members to think this through, treatment options and overall condition. If they make an effort to imagine what “stiffness” is like. Or if they know what it means to go to sleep dreading the night. Or the guilt of not resisting to a piece of bread and wondering what that weakness will cost.

Do they take any time putting themselves in our shoes? Or is this me putting on a show of self-pity?
I’m not sure, but it pretty lonely to go through this and face all those fears - as there are so many of them - when you realize they don’t really know what they’re talking about when saying “it’ll be fine!!!” If only these loved ones did their research, then I’d believe their comforting words. But not otherwise. No?

I guess this being my lifetime journey, I must simply find my path forward, even if alone.

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anthony.carrone Community Admin
I love seeing all the support here in the community <3 Thank you for sharing this <inline-mention username="jpjp" user-id="2386581"/> -Anthony (Team Member)
CommunityMember6434fd Member
You many think you are venting this because you don't feel strong; but I see just the opposite! You are very strong for having the courage to vent such horrible circumstances! I feel sad just knowing that others (like you) must deal with this feeling of how no one does really gets it! I am very sorry to hear of your struggles. Please lean on me, or anyone on this site! I am 60 years old, and was diagnosed with AS 40 years ago. The amount of problems brought on by AS has been mind blowing! Please hang in there and lean on others with AS that actually DO get it! All the best, and many hugs!
1. healthyas Member
 <inline-mention username="ASisaPaininmyASS" user-id="4182701"/> thank you! I’m sorry to hear your diagnosis came on so early. And thankful for your offer to listen to me. Same here. I find reading other’s stories SO helpful. Yet, when I first learned about this disease, I was terrified to open any forum and discover any scary stories. I was wrong. It is great to find a support group.
nataliebradt Member
Hello <inline-mention username="jpjp" user-id="2386581"/>! Thank you for sharing your story. I too have had the feeling lately of being really alone in my disease. I always get the,” You'll be fine, it’ll go away.” Or the, “ A lot of people live with arthritis, you’ll be fine.” It is an extremely frustrating process to explain to people constantly that this isn’t going to go away and I’m not going to be fine. There is such a misconception about arthritis in general which makes it difficult to explain to people that have no understanding of the disease. You are definitely not alone in feeling this way! I have found that I don’t bring it up to people much other than my husband and parents. I honestly spend most of my time talking to this community because this is exactly the sort of support anybody with AS needs. When it comes to explaining my disease to other family and friends, I try to explain it as well as I can but most the time there I start to glaze over. It is definitely a struggle to get people to care. But I have learned that I just lean on the people that actually do care about my situation versus focusing my energy on the people that don’t! If you ever need to talk or need support at all please feel free to message me! Sometimes we just need somebody to listen. I wish you nothing but the best and thank you again for sharing! Xx- Nat
1. healthyas Member
 <inline-mention username="nataliebradt" user-id="4202998"/> thank you. Indeed. Just the other day my in-law finally asked me what is wrong with me after picking up on some conversations with other family members on how my treatment is advancing or when I’ll go back to work. I took a deep breath and decided to open my heart and described to her my conditions finishing my story holding back a few tears. She hears it all and replies, “yeah, I have a lot of back pain sometimes too”. And that was that. I then realized I need not share too much with anyone and rather pick better those with whom I’ll open up to. And with them, be very communicative and clear on why I’m sharing or just venting and how they can help- as per the suggestions made here. Super thanks!
BrandyCole81 Member
I'm so sorry you're going through this. Your disease progression is much more severe than mine, and I have so much respect for what you must be going through, especially with children. A lot of times, it seems that people don't research a disease if they already think they understand it. And most people have a very strongly ingrained idea of what "arthritis" is: some mild joint pain in one or two places on bad weather days that only affects people in their 70s and 80s. Since spondyloarthritis and ankylosing spondylitis aren't well-publicized diseases, people often don't realize that severe complications like yours can happen to someone as young as you. I found that sending people a short 2 minute video explaining the disease process helped with that. People also seem to understand illnesses through the lens of their own experience. If they've never had a chronic serious illness or been close to someone who has, they may see sickness and injury as these temporary things that either kill you, pass quickly, or have a simple medical solution. The person who thought your hip surgery would be a cure-all sounds a little like that. Sometimes the only thing that helps those people is to experience chronic illness up close. My husband was one of those guys who barely even caught colds and had never really been to the doctor before I met him. His whole family was like that. The idea that someone could just hurt, long-term and non-stop, was kind of baffling to him until he had a herniated disc in his back. Then he got it. I've noticed that most people in my life are well-intentioned and just may not understand HOW to support me best. When someone says "it'll be fine," they're trying to cheer you up, but sometimes you just want somebody to acknowledge, "Wow, your whole situation really sucks." Sometimes you might need someone to make you laugh. Sometimes you may need someone to help you out more around the house. But the hard part is, most people won't know what we need until we tell them. They may be afraid if they acknowledge how bad your condition is, that they'll bring you down. Or afraid that if they joke with you, it'll make it seem like they're not taking it seriously. Or afraid that if they offer to help, they're over-stepping their boundaries. And mostly I realized that I had to bite the bullet and just tell them. "Hey, when I'm stressed out at the doctor, it helps when you crack jokes. It takes my mind off it;" or "I just need to vent about how awful this whole thing is for a few minutes while somebody listens (and maybe gives me a hug and some ice cream). Is that ok?" That kind of stuff. It feels weird to be that open with people, but it has helped. I really hope that you feel better and that people in your life learn how to support you in the ways that help you best.
1. healthyas Member
 <inline-mention username="BrandyCole81" user-id="4186031"/> thank you for your support. You are right, and these are fine suggestions. I like to remember always that we’re warriors, and then I feel better straight away. Thank you!
2. healthyas Member
 Indeed. <inline-mention username="BrandyCole81" user-id="4186031"/> , thank you for your reply. And story. AS is simply PAIN, and the osteoporosis is very scary because it is so painless, and silent. I guess it is too much for someone to understand if their experience of pain is a jammed finger or bruised knee or even a broken bone. It’s all pain that’ll go away, it’s all momentary. And then how to really get inflammatory, chronic pain?
Katie Saville Contributor
Hey @jpjp! I am so sorry you are going through all of this and that you feel the way you do. I have been there in the early days of my diagnosis, and it is a really hard and scary place to be. From the get go, my parents were 100% supportive and only wanted the best for me. I attribute a lot of that to the fact that my father has struggled with scoliosis his entire life so there was a level of understanding there. My husband, on the the other hand, wasn't that great about it in the beginning. This really hurt as I felt like out of all the people in the world, my husband, my BEST friend in the world, should understand. The fact of the matter is that no, people can't understand unless they've been through it or something similar to it. The one thing that really opened my husbands eyes were the stories and articles I wrote here on this website. I started sending them to him and it seriously changed everything. Not only did he have a better understanding of the physical pain, but he also saw how bad I was hurting emotionally. I know I've talked to you about how I have two kids as well, and him having to take over both the working roll and the home roll was difficult for us both. But once he had a better understanding, he quit complaining about it and gave me a lot more grace. If I were you, I would share this with whoever you can. Let them see and hear your words and how certain things make you feel. A hip replacement is MAJOR and shouldn't be dismissed as a blessing or a better option to what you're doing now. You have every right to feel the way you do, don't ever second guess that!! Sending you hugs and hoping things will improve for you, both physically and emotionally! -Katie, Team Member
1. healthyas Member
 <inline-mention username="Katie Saville" user-id="2388661"/> I will give some thought to this idea of sharing these posts, thank you for your suggestion. And support. Hearing you is so helpful, knowing someone completely different may have had a similar struggle and how it was with your partner makes me feel much less lonely. Yes, it’s all so major, you’re right!
healthyas Member
Thank Doreen! Sorry for venting, but your kind words are super comforting!
Doreen H Community Admin
jpjp, Thanks for putting this out there. It certainly can't be easy with two little ones. Always know this community is here for you. Sending many hugs, Doreen (Team Member)
Ali Long Moderator & Contributor
Hi <inline-mention username="jpjp" user-id="2386581"/>! I'm so sorry to read that your in a bad flare and that you know have osteoporisis. You must be in so much pain all the time I'm sorry! Congratulations on your new born son! That is amazing but I cant imagine caring for a new born while being in so much pain and having fatigue so well done to you! I completely understand that you feel like no one cares and understands. I feel that no one understands, and unfortunately no one can understand because they arent experiencing what you are. This often leaves me feeling disheartened, and leaves me feeling like no one cares. But I have to remember that they do care, they just dont understand. This is why I am so grateful for this community. Everyone here understands living with pain and constant fatigue. How I approach this issue with my family and friends is to be completely open and honest. I find it hard to ask for help, but I do ask for help. I tell my friends and family how I am feeling, both physically and mentally. And how they can help me. If I feel like someone isn't trying to understand, or I feel like they dont care, I tell them. I send them articles to read and ask them to join the facebook support groups that I am joined. They will never understand fully, but for me what works is telling them everything and telling them what they need to do to help me. If someone says 'oh youl be fine!', I argue my point that I wont be fine, I have this condition forever but you can do 'this' to help me be close to fine. This is a lonely conditon, I hope that you recieve the help and support that you need. Just remember that people do care even if they dont understand, and more often than not, they want to help, they just dont know how. If you ever need to talk you can send me a message! Ali (Moderator). 
1. healthyas Member
 <inline-mention username="Ali Long" user-id="2378712"/>, thank you! You are right, and giving me great guidance here. I haven’t done my part in communicating this well. And should be confident that there is empathy. Thank you for your message!!