We know that living with Ankylosing Spondylitis, or AS as we all know it, is not easy. It is not just a back problem. It is a long-term condition that can affect your entire life, your work, your household chores, your time with friends, all of these things. But you don't have to face this challenge alone. It will be a great strength to tell those who love you and are close to you about this and get their support.
Who do you want to tell about this?
Talking to someone about a lifelong condition like AS is a very personal thing. So, who you tell and how much detail you share is entirely up to you. It's your decision.
Think about it, sometimes you have to change a trip you've planned, or ask for help to get something done. The people you spend the most time with each day, like your family, your spouse, or your best friend, are more affected by this situation.
Sometimes you may feel sad or frustrated about your condition. Or you may feel like you're letting your friends down when you can't join them for activities. But the more you talk about it openly and honestly with your loved ones, the easier it will be for them to be there for you through the good and bad times in your life .
What do you want to say? How do you want to say it?
You may be thinking, "Okay, I'll tell you. But what should I say? How do I start?" Talking about this can sometimes be difficult, even with someone you're very close to. The best thing to do is to be as simple and direct as possible.
If you need to explain AS to them, stick to the basics unless they ask for more details. If you're talking about how you're feeling, try to be specific. For example, instead of just saying, "I'm struggling," you can talk about the symptoms that bother you the most.
Imagine that you can't do a certain job or go on a trip. Explain the reason to your loved one. You could say something like, "Because of my back stiffness, sitting for long periods of time is very painful. That's why I can't make this trip." That way, they will understand your situation more easily.
Let's explain your medical condition to them.
Your family and friends may not know much about AS. They may think it's just "a problem with breathing." So help them understand what AS is and how it affects your daily life.
Simply put, AS is a condition where our immune system attacks the joints in our spine due to a malfunction. This causes pain, stiffness, and difficulty moving.
If you'd like, it's a good idea to bring your partner, friend, or family member with you to your appointment . This will give them the opportunity to learn more about the procedure directly from the doctor and ask any questions they may have.
When you have physical limitations due to AS, you may need extra help with household chores or work. While asking for help may feel difficult, it is a great way to share your experience with someone else and give them a chance to connect with you.
| Topic to talk about | How to explain and examples |
|---|---|
| Symptoms | "Although I don't see much difference on the outside, the pain and stiffness I feel inside are very intense. It's the hardest when I get up in the morning." |
| Invisible symptoms | "The biggest thing that comes with this disease is fatigue . When I say a little tired, it's not just normal tiredness, it's a feeling like your whole body is losing its energy." |
| Physical limitations | "I have a hard time lifting heavy things, bending over a lot, or sitting for long periods of time. That's why I avoid some jobs." |
| Flare-ups | "Some days, this pain and other symptoms suddenly get a lot worse. We call it a 'flare-up.' On those days, I need a little more help from you." |
Talk about your feelings too.
Because AS symptoms can affect your daily life, it's important to let others know that things like pain, stiffness, and fatigue can change your daily routine. This may mean you can't do certain activities, or the way you do them may change.
When people understand that, they can also understand how the stress you feel because of AS can affect your mood. Talking about your thoughts and feelings with someone close to you can also be a great relief for you.
Remember, AS symptoms are things you feel but aren't visible to others. For example, fatigue is a very common symptom that you may not notice, no matter how much you suffer from it.
Tell us how you are managing this situation.
The people in your life may not know how you deal with AS on a day-to-day basis. It's a good idea to tell them about your treatment plan so they can get an idea of what to expect.
This may include things like the physical exercises you need to do, physical therapy treatments, nutritional needs to help manage your AS condition, and medications you take. When they are aware of these, it is easier for them to understand why you need to exercise every day and why you should not eat certain foods.
If you and your family would like to learn more about this, there is very reliable information on the websites of international organizations such as the Spondylitis Association of America (SAA). You can read that information and talk to your doctor about it further.
Take-Home Message
- Ankylosing Spondylitis (AS) is not just a back problem, it affects your entire life. Don't go through this journey alone.
- It's up to you to decide who you tell about this and how much. But talking to those closest to you can be a great source of strength.
- When talking, be simple and honest about how you feel, especially explaining any symptoms that may not be visible, such as fatigue.
- Asking for help is not a sign of weakness. It gives your loved ones a chance to support you.
- Tell them about your treatment plan (exercise, medication) so they can understand your daily needs.
- If you are in doubt about anything, talk to your doctor for the best and most reliable advice.
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