Living with ankylosing spondylitis (AS) can affect your relationships at work, at home, and in your social life -- just like any chronic condition can. But it’s not something you have to go through on your own.
When you open up to those who are closest to you about how AS affects your life and body, it can help them know how best to support you. And when the people around you have a chance to accept and understand your condition, it can help you deal with the extra challenges you face in your everyday life. Plus, it will help you feel understood and not alone.
Who to Tell
Sharing about a lifelong condition like AS can be very personal. How you decide to talk about your health is completely up to you, including who you tell and what level of detail you feel comfortable sharing.
There may be times when you find you need to reschedule plans or ask for help with certain tasks. The people closest to you will be most affected by your AS, especially if you spend much of your time with them day to day.
You might also sometimes feel sad or frustrated about your condition, or not want to let people down or miss out on group activities. But the more clearly and consistently you communicate with the people you love, the more it may help them to be there for you in your ups and downs.
What to Say
It can be tricky knowing what to say about your condition and how to say it, even with loved ones. It’s usually best to keep whatever you share as simple and straightforward as possible.
If you want to explain AS, stick to the basics unless they ask for details. If you’re sharing how you feel, try to be specific. You could start by talking about the symptoms that bother you most.
If you need help with certain tasks or can’t do an activity, help your loved one understand why. Explain what your physical limitations or issues are and why you are concerned about moving your body in that way.
Explain Your Condition
Your family and friends may not know much about AS. Help them understand what AS is and how it affects your daily life.
If you feel comfortable, you might want to invite your partner, a friend, or a family member to come to one of your doctor’s visits. That way they can learn more about your AS directly and can ask any questions.
If AS brings physical limitations, you might need extra help doing tasks at home or at work. Although it might feel hard to ask for help, it can be a good way to let someone in to your experience and give them a chance to connect.
Talk About Your Symptoms
AS symptoms can affect your everyday life, so it can be helpful to let people know if pain, stiffness, and fatigue might change some of your daily habits. It might keep you from doing certain activities or change how you do them.
When people understand that, they can also see why AS might cause you stress that affects your mood. It might help for you to discuss some of your feelings with someone who is close to you.
Remember, AS symptoms are things that you feel but the people around you might not be able to see. For instance, fatigue is a common symptom that many people will not realize you might be dealing with.
If you have a bad flare-up of AS symptoms, let your loved ones know so they can be extra aware of your needs.
Share How You Manage
The people in your life might not know about the ways you handle your AS. You may want to tell them about your treatment plan so they will know what to expect. That might include the physical activity you need to do, any nutritional needs that help manage your AS, and medications you take.
Organizations like the Spondylitis Association of America (SAA) are dedicated to helping people with AS. They offer many resources about AS to help you and your loved ones better understand this condition and get support for it.