Finding Acceptance, Belonging, and Embracing Your Journey

By Tomesha Campbell

2 min read

Living with a chronic inflammatory condition like axial spondyloarthritis (AxSpA) can often make us feel like outsiders in a world that doesn't fully understand our experiences. One of the unique aspects of AxSpA is its invisible nature. Unlike conditions with visible physical manifestations, the pain and fatigue associated with AxSpA aren't apparent to the outside world. This invisibility can create a significant barrier to understanding and empathy from others who may not fully comprehend the condition's impact.

AxSpA can also significantly impact our physical capabilities, often limiting our ability to participate in activities we once enjoyed. The pain, stiffness, and fatigue can make it challenging to keep up with social engagements, hobbies, and daily routines. As a result, we may gradually withdraw from social interactions, leading to isolation and disconnection from the world around us.

Over time, physical limitations and the need to conserve energy may gradually shrink our social circle. We may no longer fit in or belong in specific social settings because our condition prevents us from fully participating. This sense of isolation can be emotionally challenging and exacerbate feelings of not being accepted or understood.

How to overcome feelings of isolation

Despite the challenges, there are ways to overcome feelings of isolation that can accompany living with AxSpA. That's why we will explore five empowering ways to overcome feelings of isolation and forge a path toward acceptance and belonging.

1. Seek support

Connecting with others who share your journey is vital. You can engage with fellow AxSpA patients who truly understand your challenges by joining online support groups or local networks. Through sharing experiences, concerns, and triumphs, you will find solace, encouragement, and a sense of community.

2. Educate your loved ones

Fostering understanding among your family and friends is essential. By providing educational resources, articles, or personal stories that shed light on the physical and emotional impact of AxSpA, you can help them grasp the complexities of your condition. Increased awareness and empathy can pave the way for greater acceptance and Support.

3. Embrace self-advocacy

Empower yourself by becoming your advocate. Communicate your needs, whether it's requesting workplace accommodations, modifying social activities, or seeking appropriate medical care. By taking an active role in your health, you can assert your worth and gain the respect of those around you.

4. Practice self-care

Prioritizing self-care is vital to nurturing your emotional well-being. Recognize and accept your limitations, listening to your body's cues. Engage in joyful activities, such as gentle exercises, meditation, hobbies, or quality time with loved ones. By focusing on your well-being, you cultivate resilience and reduce the impact of external judgments.

5. Professional therapy

Seeking professional therapy or counseling can provide invaluable support for addressing the emotional challenges of AxSpA. A qualified therapist can offer guidance, coping strategies, and a safe space to express feelings. They can help you process the sense of not belonging and develop a healthier mindset that enables you to thrive.

By embracing these five powerful strategies, you can break free from the shackles of isolation and build a robust support system, ultimately finding acceptance, belonging, and renewed strength on your journey with AxSpA. Remember, you are not alone. Together, we can redefine what it means to truly belong and support one another as we navigate the ups and downs.

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

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LisaWY Member
<inline-mention username="Tomesha Campbell" user-id="4753760"/> This was a freat article. I agree with all five recommendations. Especially the first, seek support. It is so important. When I was diagnosed with MS, I needed a year of adjustment before I reached out to support groups. I found a great one and attended for years. What I find really sad is that because we now have computers, the community support groups have decreased and dried up. It seems like if you have researched enough information about your condition, you should be satisfied. When I was diagnosed with AS, it took me about three months to start to reach out. No support groups in my little town, so I knew it was up to me to search out support.
1. Tomesha Campbell Moderator & Contributor
 <inline-mention username="LisaWY" user-id="8400168"/> thank you so much! It is definitely sad to hear the community groups have dried up. Great to know that you've taken charge to seek out support in the AS community. Hope some more community groups sprout up for you!
LisaMichelle1092 Member
I have struggled to find a healthy online community of others who are chronically ill for years. They are either full of pseudoscience and people who don't want to actively take part in managing their illnesses, or are so small that posts are few and far between. Which is especially difficult for me as my city doesn't have any kind of local groups for really much of anything except AA and NA. And to be honest, I get tired of trying to explain that psoriatic arthritis and AxSpa are not like wear and tear arthritis to those in my life. I've thought about asking my rheumatologist about starting a group. She's part of the only large rheumatology practice in my city. I did try and get a group going for my other autoimmune disease, Sjogren's, but there was only one other person who was well enough physically and emotionally to attend a very casual get-together every couple of months. I'm glad that I found this forum for information and support. I do wish more people would respond to posts though. 
1. Tomesha Campbell Moderator & Contributor
 <inline-mention username="LisaMichelle1092" user-id="6222695"/>, thank you so much for your response, and I appreciate you highlighting the struggles many people face with finding that community locally. I hope your rheumatologist encourages you to start a group or can connect you to others who might be interested in meeting periodically. I'm glad you have the forum! I aim to be more proactive in responding to posts. Sometimes, it really does take one person to kick off the conversation, and more people feel comfortable joining in.
James Hollens Moderator & Contributor
Hey <inline-mention username="Tomesha Campbell" user-id="4753760"/> , Feeling isolated from the world is one of the most evil symptoms of AxSpa and these are some fantastic ideas at combatting this! Connecting with the chronic community helped me the most with this for sure. Seeing that it was not just me in this position really helped me accept my diagnosis and feel less alone. I've also built some wonderful relationships along the way, so in a way I am kind of grateful for my condition for helping me find some of the most incredible spoonies out there! Thank you for mentioning professional therapy too. I think there is sometimes a stigma in certain communities (especially in mine and with men in general) surrounding the use of therapists. But it can be ever so helpful and we should be more accepting and open to new ways that can benefit our mental health enormously! Thank you for yet another amazing article, James (Community Member)
1. Tomesha Campbell Moderator & Contributor
 <inline-mention username="James Hollens" user-id="2107776"/> thank you so much for your thoughtful responses. I always smile when I see your name. Thank you for mentioning the stigma surrounding specific communities seeking therapy. I remember my dad being very apprehensive when I first brought it up. In time, he became more open to the idea and regularly spoke with a therapist. I agree with how beneficial it can be and how important it is for others to share their experience. It helps normalize that therapy is for everyone.