Most people know about arthritis, but tell someone you have ankylosing spondylitis (AS), and they may look perplexed. AS is a type of arthritis that attacks primarily your spine and can lead to severe pain or spinal fusion. It may also impact your eyes, lungs, and other joints such as weight-bearing joints.
There can be a genetic predisposition to developing AS. Although rarer than some other types of arthritis, AS and its family of diseases affects at least 2.7 million adults in the United States. If you have AS, it’s important you get support from your family and friends to help you manage the condition.
How to get support
It’s challenging enough to pronounce the words “ankylosing spondylitis,” let alone explain what it is. It may seem easier to tell people you just have arthritis or try to go it alone, but AS has unique characteristics that require specific support.
Some types of arthritis appear as you age, but AS strikes at the prime of life. It may seem that one minute you were active and working, and the next you were barely able to crawl out of bed. To manage AS symptoms, physical and emotional support are crucial. The following steps may help:
1. Ditch the guilt
It’s not unusual for someone with AS to feel that they’ve let their family or friends down. It’s normal to feel that way from time to time, but don’t let guilt take hold. You are not your condition, nor did you cause it. If you allow guilt to fester, it may transition into depression.
2. Educate, educate, educate
It can’t be stressed enough: Education is key to helping others understand AS, especially because it’s often considered an invisible illness. That is, you may look healthy on the outside even though you’re in pain or exhausted.
Invisible illnesses are notorious for making people question if there’s really something wrong. It may be hard for them to understand why you’re debilitated one day yet able to function better the next.
To combat this, educate the people in your life about AS and how it impacts your day-to-day activities. Print online educational materials for family and friends. Have those closest to you attend your doctor’s appointments. Ask them to come prepared with questions and concerns they have.
3. Join a support group
Sometimes, no matter how supportive a family member or friend tries to be, they just can’t relate. This may make you feel isolated.
Joining a support group made of people who know what you’re going through can be therapeutic and help you stay positive. It’s a great outlet for your emotions and a good way to learn about new AS treatments and tips for managing symptoms.
The Spondylitis Association of America website lists support groups throughout the United States and online. They also offer educational materials and assistance finding a rheumatologist who specializes in AS.
4. Communicate your needs
People can’t work on what they don’t know. They may believe you need one thing based on a previous AS flare when you need something else. But they won’t know your needs have changed unless you tell them. Most people want to help but may not know how. Help others meet your needs by being specific about how they can lend a hand.
5. Stay positive, but don’t hide your pain
Research has shown staying positive may improve overall mood and health-related quality of life in people with a chronic condition. Still, it’s hard to be positive if you’re in pain.
Do your best to stay optimistic, but don’t internalize your struggle or try to keep it from those around you. Hiding your feelings may backfire because it may cause more stress and you’ll be less likely to get the support you need.
6. Involve others in your treatment
Your loved ones may feel helpless when they see you struggling to cope with the emotional and physical burdens of AS. Involving them in your treatment plan can bring you closer together. You’ll feel supported while they’ll feel empowered and more comfortable with your condition.
In addition to going to doctor’s appointments with you, enlist family members and friends to take a yoga class with you, carpool to work, or help you prepare healthy meals.
7. Get support at work
It’s not unusual for people with AS to hide symptoms from their employers. They may fear they’ll lose their job or be passed over for a promotion. But keeping symptoms secret at work may increase your emotional and physical stress.
Most employers are happy to work with their employees on disability issues. And it’s the law. AS is a disability, and your employer can’t discriminate against you because of it. They may also be required to provide reasonable accommodations, depending on the size of the company. On the other hand, your employer can’t step up if they don’t know you’re struggling.
Have an honest conversation with your supervisor about AS and how it impacts your life. Assure them of your ability to do your job and be clear about any accommodations you may need. Ask if you can hold an AS information session for your co-workers. If your employer reacts negatively or threatens your employment, consult a disability attorney.
You don’t have to go it alone
Even if you don’t have close family members, you’re not alone in your AS journey. Support groups and your treatment team are there to help. When it comes to AS, everyone has a role to play. It’s important to communicate your changing needs and symptoms so those in your life can help you manage the tough days and thrive when you’re feeling better.