7 things I wish people understood about ANCA vasculitis
Living with a chronic illness like EGPA involves many complexities
I’ve had eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA vasculitis, for 17 years. After my diagnosis, I had to change my life and reinvent myself. At the same time, I was grieving my life before EGPA and educating myself about my new normal.
In the years since, I’ve tried to help family and friends understand my limitations and the complexities of having a rare, chronic disease. But even after these explanations, there are several things I wish people better understood about living with ANCA vasculitis. Following are seven of them:
1. Dealing with vasculitis isn’t easy.
Keeping myself healthy is hard work. I have a well-choreographed dance of doctor appointments, medical tests, and infusions. I must always listen to what my body tells me and act upon any symptoms that could be indicative of a relapse or infection. Missing an appointment could be the difference between staying healthy and having a flare.
2. Vasculitis is a chronic illness.
There currently is no cure for ANCA vasculitis. Many people ring a bell after they complete cancer treatment, but I’ll never be able to do that because my treatments are ongoing. A friend once asked me if I was “done” with my illness, and I realized that they didn’t understand the definition of chronic. ANCA vasculitis is more like a marathon than a sprint, though my race will never end.
3. I look good on the outside.
I spend a lot of my limited energy making sure I look good and dress well. I carefully pick out clothes to hide my prednisone-induced weight gain. By putting my hair up in a bun, I can hide the fact that I haven’t washed it for days.
However, people can’t see the internal damage from years of taking potent medicines to keep my disease under control while my inflamed blood vessels make me short of breath and shut down my kidneys. My illness is all on the inside, invisible to most.
4. I have good and bad days.
I usually don’t know how my body will feel on any given day. Sometimes I’ll lie in bed in the morning wondering how my illness might affect me in the next few hours. On good days, I might accomplish many tasks and move effortlessly through my activities. Others won’t see me on the bad days, because I like to cocoon inside my house when I’m feeling awful.
5. Socializing is exhausting, and sometimes I have to cancel plans.
Being social is exhausting for me. A simple cocktail party can make me feel like I’ve run a marathon, because even if I’m sitting down, I must stay alert and be friendly. Smiling for hours is more than my tired body can handle.
Although I don’t want to cancel plans with friends and family, sometimes my body is too tired and needs rest. This is the only way that I can rejuvenate myself and be ready to spend time with everyone on another day.
However, if I cancel plans, I feel guilty about letting people down. If I cancel plans with you, please understand that it’s not you, it’s me. Also, please show empathy by not expecting me to keep up with your busy social calendar.
6. I may need help to work a 9-to-5 job.
Although I would prefer to hold down a traditional 9-to-5 position, I also realize that my ANCA vasculitis prevents me from being a dependable employee. Juggling multiple medications, tests, infusions, and appointments is a full-time job.
I also need many days off to attend medical appointments. This doesn’t mean I’m lazy. I’ve learned to prioritize my health to survive.
7. Please don’t give up on me.
Here’s what I can offer you: I can bring peace and calm into your life and teach you to avoid stressors. If you like taking life at a slower pace, getting to know me is worth the time. And if you like sitting on the couch, ordering takeout, and watching a movie in your pajamas, I’m your girl.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
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Comments
Lacy Max
Your seven points of information were spot on!
My husband has GPA and the days vary a lot, sometimes even the hours between lunchtime and dinner can change drastically depending on what he tries to do. Neuropathy in his legs and feet never goes away but sometimes it’s just way more intense and painful.
I will be passing your message to friends and family members to also give them a better understanding of the situation and why we can’t always attend certain events and activities.
Thank you for your insightful words and best of luck to you!
Suzanne DePaolis
I hope your family and friends find this useful
Elisa Truitt
THANK YOU! You Nailed It. I’m keeping this to send to friends ☺️
Suzanne DePaolis
I'm glad this helped you
Suzanne DePaolis
thank you
Pam Shaffer
These words hit me just right. I used to be one of those people who would think unflattering thoughts about people who look great on the outside but park in a disabled parking spot. Call it karma but I now have no visible signs of not being able to live my life without assistance but this war rages inside and I am now that person in that parking spot.
I never want sympathy but I wish my friends, family, and anyone that sees me would be able to know what I know about this disease without having to experience it. I wish THAT on no one.
Although this is a rare disease, I find comfort in the groups I have joined in social media. And it seems that there are TOO many people who know vasculitis.
Stay strong with me Warriors. Advocate for yourself and loved ones.
Very respectively
Pam.
GPA dx 7/2021
Nancy Kilbourn
Your seven points are a great support to many of us. thank you! I will copy this and send to some close friends.
I have MPA and you described my life as well. I was in remission for two years and now it is back. Every one, sweetly, is wishing me to get well. They just don't understand. But I accept their concern, they are friends and mean well.
But my life is now so limited. Like you said, we don't know from day to day what to expect.
The one great thing in my life is my wonderful, understanding, loving husband.
Lynn Tinman
I was diagnosed with GPA (then Wegener's Granulomatosis) in December of 1984. In regards to number 6, I no longer entertain the idea of trying to work even a consistent part time job, much less full time. I do try to volunteer when I am feeling well. When people ask my occupation, I tell them that I'm a full time patient.
Suzanne DePaolis
Sometimes I refer to myself as a profession patient so I understand what you are going through. I have also thrown myself into volunteer work that is less demanding so I can feel productive.
Ellen Simonetti
Thank you for helping me see that I am not alone in my vasculitis dilemmas. So much of the problem has to do with others not understanding . I get tired of telling friends and family that I still have to be careful of COVID. They tell me that I'm wasting my life away. I should be over this disease, etc., etc., etc. Do you know of a group I can join with similar concerns?
Suzanne DePaolis
Ellen, you are definitely not alone and do not have to go through it alone. Many Facebook groups exist for people with vasculitis and even specific ones for ANCA vasculitis. I also recommend contacting the Vasculitis Foundation. They have support groups and Zoom calls regularly. Please remember you are not alone!
JoAnne Layton
I was recently diagnosed as (only) having URTICARIAL vasculitis, but can relate to much of what you say here, and Many Thanks 💥 for saying it.
I now realize that I have to come up with a brief but accurate way of explaining / mentioning my illness to people, otherwise I end up running my mouth off & they still don’t understand. And so many people don’t accept the Covid connection with my disease, another frustration because I don’t like them thinking that I ‘acquired’ this illness & it’s associated organ problems through lifestyle factors : additional stigma. * Vasculitis leading to heart failure & asthma.
— I did recently have a friend say exactly what you mention here “But you looked quite well the last time I saw you!”, and another, when I hesitated on how to respond to her question “How are you doing?” - jovially filled in the blank for me “Well, we’re still UPRIGHT! Yes?!”
Yes, I’m still upright the few times they see me in public, but just the journey to diagnosis & the beginnings of full assessment & treatment, has been a rollercoaster ride.
Peter ward
Still learning about what I have got. Trying to come to terms …
JUANITA
Thank you so much. I was diagnosed with GPA on Dec 22.2022. I have good days and I have bad days. I still work full time because I have to. It's not easy, especially days that it's hard to just get out of bed. But somehow manage. People asked me questions all of the time about my illness I just simply tell them to educate themselves. I hear ' But you don't look sick anymore' I tell them it's all on the inside. I get depressed because it's been a year almost with lots of medication but no changes, I have a hard time going to sleep at night in fear that I won't wake up. I have been through alot in life but when the doctors tell you that you are not curable just treatable well that everything.
Kristopher Richardson
Good Evening,
I was diagnosed with EGPA last May after being sick for some time. Last week I had my appendix removed. I’m rheumatologist thinks the appendicitis was caused by an EGPA flare as I had stopped azathioprine while being treated for COVID. My EGPA is ANCA negative and it affected my lungs, heart, skin, bladder, and nerves. Today I had a bad day with so much fatigue that I couldn’t even get out of bed or think about taking a shower, helping with laundry etc. I’m so hard on myself, and have begun to think all of these weird symptoms that pop up are all just in my head. Your article helped me remember that just because I can’t doesn’t make me lazy—my body just won’t cooperate with my mind. Thank you again for your great writing and for sharing.
Susan
I thought reading this article was My Diary! I’m so sorry for Al who have to endure this disease. I was diagnosed w/ anca back in 2021. I have been in remission until this January and it flared up w/ a vengeance. I have not worked since January and I still don’t have it under control. Im lucky to work for a company who has provided short term disability, however I’m about to meet the end of the allowed period. Are there any benefits provided for our particular breed?? Thank you for shining a light on this !