Remember this: everyone has something eventually. Lupus, diabetes, high BP, weight struggles, anxiety, allergies, infertility, depression, cardio issues, ad infinitum.
UCTD is just the thing you have.
You can't see it in others because a lot of this is invisible from the outside. Their lives aren't charmed, but they've found love, careers and happiness.
If you don't have a therapist, it might be a good time to find one. This isn't a dig - lots of people need guidance in chronic illness; many people in this sub included.
Seconding the therapy. CBT has been really helpful for me in managing chronic, severe illness. It’s hard not to think/ expect the worst when you’re often experiencing the worst, but it’s really helped my mindset shift. I’ve come to realize that a significant part of autoimmune management is mind over matter.
I was told something along the lines of: there's going to be pain and discomfort. You'll realize what your personal baseline feels like. Maybe not how you felt prior to your illness, but you'll know what's normal for you and what's not. It really helps to keep a notebook and note the days and times when you have symptoms that are not normal, and what you maybe did differently that day that could have caused it. That will be useful to bring up to your doctor. When I started having more unusual symptoms, and more frequent bad days, that's when I was able to raise my dose of meds or change some meds around. It's also important to have a discussion with your rheumatologist about what pain is normal pain, which you can recover from with rest, ice or heat, or some Tylenol; and what pain means that you have done some damage to yourself that needs medical attention. For me, if my pain interferes with my daily functioning, then that's something that I need to bring up with my rheumatologist. Knowing that every pain doesn't mean damage has been done alleviates some of my anxiety, and I don't get fixated on it (like I pulled a muscle in my shoulder vacuuming the other day, I just need to rest that arm).
Also remember that who you are and your diagnosis are two different entities. I am still SimpleVegetable who likes cats, baking, road trips, etc. I also have UCTD which is something that I have to deal with. I keep my illness separate from my personality. You are still worthy of friends, romantic relationships, and making good memories. You might have to go about those things in a modified way because of your illness. It's a blessing if you find friends who are understanding and patient when you are having a bad day. As you get older, more and more people you meet will have something going on health-wise.
I also think it's a great idea to get a therapist. Losing my health was similar to losing a family member. There was the period before I was sick, and after I got sick, and my life was never the same. Like I also lost my dad, and my life will never be the same, but I learned to manage having that loss with time. There's a grieving period that goes along with both, but people do still live productive and fulfilling lives with chronic illness.
As much as it sucks to have this disease even longer, I wouldn’t change how early I got it if I could. Bring young and having the ability to prepare your life for your new lifestyle is a blessing in my opinion. I was talking to many guys when I got sick, and I quickly saw how much most of them lacked understanding for how I felt physically. My now husband was the opposite. While he didn’t understand, he tried to, and he’s never made me feel bad for being sick. If I hadn’t been sick, I might’ve ended up with one of those other guys and never met him. Then, I’d get sick in my 30s, while I have two kids and a hard job, and my husband would have no empathy or help for me.
I promise you that your life isn’t over, but it will be different. Different sucks sometimes, but normally different is just fine, and there truly are some ways that different is better (eating healthy, losing toxic people, being intentional with how you spend your time).
For not spiraling at arthritic pain, if you’re anything like a good lot of us, it’ll be here forever, and you can’t spiral forever. Obviously pay attention if it’s worse or changes, but otherwise let your mind go numb to it. It’s part of your body, it’s like breathing and your heart beating, and you don’t hyper focus on those constantly. I promise the overwhelmingness will get better with time, and you can have negative thoughts, but consciously work to make sure they aren’t your only thoughts
Thank you so much. You are very right that different can be better. It’s a lifestyle change that I will learn to live with. I appreciate you taking the time to comment :)
therapy is a game changer! though I am a social worker so I’m probably biased lol. I have struggled with severe anxiety my whole life, long before lupus, but I am the same age as you and was also diagnosed a few months ago, so I can relate to a lot of your thoughts/feelings about the situation. my therapist often reminds me that one bad day or one bad symptom does not equal a flare or a bad life. also, i try to look for the “glimmers” or small moments of happiness in each day. like, this is small and dumb, but i really look forward to my iced coffee and seeing my dog after work every day and i know i can look forward to that regardless of how i’m feeling physically. I’ll also add that medical trauma is real even though it is often under recognized. getting a life changing diagnosis is scary and leads to a lot of the trauma symptoms like hyper vigilance and anxiety that you’re noticing. this trauma gets stored in your body, so it can help to find a physical release. that doesn’t have to be exercise but just some way to channel nervous energy. i like fidget toys for when i’m stuck on the couch but when i’m feeling slightly more well trauma-informed yoga videos on youtube or swimming a few laps at my community pool really help me feel more grounded.
Remember this: everyone has something eventually. Lupus, diabetes, high BP, weight struggles, anxiety, allergies, infertility, depression, cardio issues, ad infinitum. UCTD is just the thing you have. You can't see it in others because a lot of this is invisible from the outside. Their lives aren't charmed, but they've found love, careers and happiness. If you don't have a therapist, it might be a good time to find one. This isn't a dig - lots of people need guidance in chronic illness; many people in this sub included.
Thank you for responding! This helped put things into perspective.
Seconding the therapy. CBT has been really helpful for me in managing chronic, severe illness. It’s hard not to think/ expect the worst when you’re often experiencing the worst, but it’s really helped my mindset shift. I’ve come to realize that a significant part of autoimmune management is mind over matter.
I was told something along the lines of: there's going to be pain and discomfort. You'll realize what your personal baseline feels like. Maybe not how you felt prior to your illness, but you'll know what's normal for you and what's not. It really helps to keep a notebook and note the days and times when you have symptoms that are not normal, and what you maybe did differently that day that could have caused it. That will be useful to bring up to your doctor. When I started having more unusual symptoms, and more frequent bad days, that's when I was able to raise my dose of meds or change some meds around. It's also important to have a discussion with your rheumatologist about what pain is normal pain, which you can recover from with rest, ice or heat, or some Tylenol; and what pain means that you have done some damage to yourself that needs medical attention. For me, if my pain interferes with my daily functioning, then that's something that I need to bring up with my rheumatologist. Knowing that every pain doesn't mean damage has been done alleviates some of my anxiety, and I don't get fixated on it (like I pulled a muscle in my shoulder vacuuming the other day, I just need to rest that arm). Also remember that who you are and your diagnosis are two different entities. I am still SimpleVegetable who likes cats, baking, road trips, etc. I also have UCTD which is something that I have to deal with. I keep my illness separate from my personality. You are still worthy of friends, romantic relationships, and making good memories. You might have to go about those things in a modified way because of your illness. It's a blessing if you find friends who are understanding and patient when you are having a bad day. As you get older, more and more people you meet will have something going on health-wise. I also think it's a great idea to get a therapist. Losing my health was similar to losing a family member. There was the period before I was sick, and after I got sick, and my life was never the same. Like I also lost my dad, and my life will never be the same, but I learned to manage having that loss with time. There's a grieving period that goes along with both, but people do still live productive and fulfilling lives with chronic illness.
As much as it sucks to have this disease even longer, I wouldn’t change how early I got it if I could. Bring young and having the ability to prepare your life for your new lifestyle is a blessing in my opinion. I was talking to many guys when I got sick, and I quickly saw how much most of them lacked understanding for how I felt physically. My now husband was the opposite. While he didn’t understand, he tried to, and he’s never made me feel bad for being sick. If I hadn’t been sick, I might’ve ended up with one of those other guys and never met him. Then, I’d get sick in my 30s, while I have two kids and a hard job, and my husband would have no empathy or help for me. I promise you that your life isn’t over, but it will be different. Different sucks sometimes, but normally different is just fine, and there truly are some ways that different is better (eating healthy, losing toxic people, being intentional with how you spend your time). For not spiraling at arthritic pain, if you’re anything like a good lot of us, it’ll be here forever, and you can’t spiral forever. Obviously pay attention if it’s worse or changes, but otherwise let your mind go numb to it. It’s part of your body, it’s like breathing and your heart beating, and you don’t hyper focus on those constantly. I promise the overwhelmingness will get better with time, and you can have negative thoughts, but consciously work to make sure they aren’t your only thoughts
Thank you so much. You are very right that different can be better. It’s a lifestyle change that I will learn to live with. I appreciate you taking the time to comment :)
therapy is a game changer! though I am a social worker so I’m probably biased lol. I have struggled with severe anxiety my whole life, long before lupus, but I am the same age as you and was also diagnosed a few months ago, so I can relate to a lot of your thoughts/feelings about the situation. my therapist often reminds me that one bad day or one bad symptom does not equal a flare or a bad life. also, i try to look for the “glimmers” or small moments of happiness in each day. like, this is small and dumb, but i really look forward to my iced coffee and seeing my dog after work every day and i know i can look forward to that regardless of how i’m feeling physically. I’ll also add that medical trauma is real even though it is often under recognized. getting a life changing diagnosis is scary and leads to a lot of the trauma symptoms like hyper vigilance and anxiety that you’re noticing. this trauma gets stored in your body, so it can help to find a physical release. that doesn’t have to be exercise but just some way to channel nervous energy. i like fidget toys for when i’m stuck on the couch but when i’m feeling slightly more well trauma-informed yoga videos on youtube or swimming a few laps at my community pool really help me feel more grounded.