11 Concerns People With Fibromyalgia Have for Their Future

If you live with fibromyalgia, you might worry about what your future looks like. It doesn’t matter if you are younger or older, the unknown can be difficult to think about when you have a chronic condition like fibro. Whether it’s because managing your illness is already tough or you’re simply unsure of how your body will change in the years to come, it’s understandable if you have some fears when it comes to your future.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

Regardless of why you might have concerns, it can be scary to think about what might or might not happen because you live with a chronic illness. Jodi Taub, LCSW, a therapist who specializes in helping people cope with chronic illness, explained to The Mighty that it’s completely normal for people who live with fibromyalgia to experience “anticipation anxiety” about the future.

“Individuals with fibromyalgia can worry about the worsening of symptoms and how they could impact their relationships, career and overall life,” Taub said. She believes that even when a physical flare happens, it can actually give rise to emotional symptoms and side effects, such as anxiety about your future.

Though concern for the future is valid and completely understandable, there are ways to cope. Taub shared her process for managing your concerns when you have fibromyalgia, beginning with the validation of these feelings.

“Every person living with fibromyalgia has the right to feel stress and worry,” she said. “Denying such feelings causes further self-shame.” If you need help understanding, accepting or coming to terms with what you’re feeling, please reach out to a trusted loved one or a mental health professional if you are able.

Taub also mentioned that it’s important to “fight the spiral of negative feelings” because once they start, they can be difficult to stop. Again, it’s important to reach out to someone if you need help with this. If you aren’t able to talk to someone, Taub suggested using a notebook to write down ways to combat your negative fears. You can also post a Thought or Question on The Mighty to get support from our fibromyalgia community.

Lastly, it’s important to find a distraction that can help you take your mind off whatever challenges you’re facing. Taub suggested going for a walk, using meditation or just doing a different activity. If you’re looking for more inspiration, try posting on The Mighty with the hashtag #DistractMe!

We wanted to shed light not only on the concerns our fibromyalgia community has for their future, but on the ways they cope with these fears. So, we asked our Mighty community to share their thoughts and experiences with us. If you struggle to think about your future with fibromyalgia, please know you are not alone.

Here are the concerns our fibromyalgia community shared with us:

1. Supporting Yourself Financially

“I’m worried that one day I just won’t be able to work and support myself or go out and enjoy myself anymore. I work over 11 hours a day and every part of my being aches by the time I get home. At 23 years old, I’m afraid that my dream of obtaining a Master’s degree won’t happen because I’m going to be too tired or too unfocused.” – Hali B.

Coping tip:

“Through therapy and support from my husband and family, I’ve had to learn and accept that most of the time, I can only take one step at a time. Finding a job and starting a family is hard for anyone, but for someone who has a hard time just showering, it’s not just a mountain—it’s the whole range! I cope by making small goals and doing little things every day I can to achieve them. Going to school? Don’t think about 18+ hours of classes… Think about a manageable load. It’ll take longer, sure, but it’s better than having a blowout halfway into the semester and dropping out like I did.” – Ashley A.

Related:

• I Can’t Work Because of My Illness, but I’m Still Valuable
• 7 Ways I Manage My Chronic Illnesses While Working Full-Time

2. Becoming a Parent

“I’m only 20 years old and I’ve realized having kids just isn’t in the plan for me. I can barely take care of myself so just thinking about a whole other human makes my heart ache. I also don’t think I’ll be able to physically go through carrying a child.” – Tarina B.

“I’m 24 and getting married in about a year. What scares me is having children. I want to be a mother, but I am so frightened of the effect pregnancy will have on my body, and how pain and fatigue will affect my ability to do activities with my kids.” – Grace H.

Coping tip:

“When I start worrying about my limitations, I start reminding myself of the positive things. Over the last few years, I envisioned the need for a cane or walker. I suddenly realized how negative that thought was, and how detrimental it had become. I remind myself every single day that I have hope! I’m in charge of me, not the fibromyalgia!” – Dawn D.

Related:

• Should I Become a Mom Despite My Chronic Illnesses?
• The Guilt and Fear I Experience as a Mother With Chronic Illness

3. Achieving Your Career Goals

“I worry constantly about my career ambitions. My current job is very understanding when I need to work from home or take off, but if I want to manage a team, how can I lead while feeling like this?” – Julie S.

“I’m afraid that I’ll be stuck in my current job forever, because I don’t feel capable of going to college and working at the same time.” – Jes M.

Coping tip:

“Therapy, family and my dogs/work. I happen to work doing what I love the most (training dogs). It hurts every day, but it helps me cope and knowing that even though I feel like a failure which I am not because I do freaking awesome at my job and that helps me think that I can conquer whatever!” – Caro A.

Related:

• To My Chronically Ill High School Self Trying to Pick a Career
• When My Career Plans Don’t Go to Plan Because of My Chronic Illness
• 3 Ways I’m Finding Fulfillment After My Illness Made Me Leave My Career

4. Feeling Like a “Burden”

“I’m worried that I will become an emotional and physical burden to my family. That because of how bad some days are I can’t take care of myself and they will have to do all the things I can’t do for me. It’s not fair for them to not be able to live their own lives. Even now at 46 it’s really tough.” – Mary K.

“[I am concerned about] being a burden on my husband and kids. I did not think at 35 it would be so hard to get out of bed in the morning.” – Melissa L.

Coping tips:

“It is not your fault you can’t do things as easily or for as long as others. If people don’t respect how much harder it can be for you then it’s their problem. You are amazing. Just like every being on the planet you are capable of amazing things. No more or less than anyone else.” – Molly L.

“Just one day at a time… or sometimes just one moment at a time! Understand that you have to put yourself first and pace yourself, which means saying no to doing certain things such as working, going out to meet anyone or run errands. Sometimes even every day things like showering! Find something to distract yourself from the pain. Listen to music, watch a funny movie, read a book, play a game…” – Moomi H.

Related: 

• To the Person With a Chronic Illness Who Feels Like a Burden
• Why Having a Chronic Illness Never Makes You a ‘Burden’

5. Symptoms Worsening Over Time

“After having fibromyalgia for 12 years, I know it will continue to get worse. I have no doubt about that. One of my main worries is whether or not I’ll be able to get a job and support myself. I’m currently fully signed off work and am on the sickness benefit, but I don’t want to be on it forever.” – Amy C.

“I’m only 24, but my body already feels like it’s near 50. How am I going to feel in 10 years? I’m scared that I won’t be able to live anywhere near a normal life thanks to my body.” – Lieke H.

“I worry that I’m going to have to deal with this pain for the next 30 or 40 years and it’s not going to get any better. I’m already on max dosage for gabapentin and I can’t afford the other stuff they want to give me. This disease is mentally, physically and financially debilitating.” – Dolly D.

Coping tip:

“Focus on now. Not by avoiding, but living one day at a time. I plan for the future as much as I can and I do take into account that my health can become worse but I don’t dwell on it. No sense in not enjoying the present because I’m worrying about the future.” – Amanda M.

Related:

• What Happened When I Realized I Could No Longer Deny My Chronic Illness
• Do Fibromyalgia Symptoms Worsen Over Time?

6. Being Remembered as “Sick”

“I try not to worry in general, but I worry that my children’s memories of me will be of me napping, telling them why we can’t go do something fun, and being short-tempered because I’m tired and in pain. I’m also a single mother, so I worry about my symptoms worsening to a point where I can no longer work full-time.” – Lori S.

Coping tips:

“I used to worry a lot about the impact all of this would have on my kids. Would they see me as sick? Would they see me as inadequate or unreliable? I don’t worry so much anymore. Life lessons are not bad for kids to learn. My kids are proving that to me every day. My kids don’t need a mom who is perfect all the time. They don’t need their lives to be without struggle or hardship or challenges. They don’t need to be shielded from the reality that is a chronic illness. They just need me. Just like I am. I am enough.” – Malinda D.

“I try to stay as positive as possible. I think about my family (my husband and kids). I remember that they need me. I’m also in school for social work, which is something I’m passionate about. I can’t wait to be in a career where I can help others. One positive thing about having a chronic illness is that I’ll better know how to work with others that also have a chronic illness.” – Ashley S.

Related:

• The Symptom of Chronic Illness No One Seems to Talk About
• The Guilt of Depending on Someone When You’re Ill

7. Your Health Becoming More Complicated

“Some symptoms are very scary and I’m concerned they may evolve into another serious illness or the doctors are missing another underlying condition.” – CoCo F.

Coping tip:

“I watch a lot of TV and movies to help the anxiety mostly. I’m home all day researching my conditions and balancing medicine so TV just helps me focus on that when I’m worried about my medicine, my doctors, my insurance. It doesn’t sound like much but it works so well.” – Ella M.

Related:

• 10 Simple Ways to Make Your Journey With Chronic Illness Easier
• Why Being Labeled ‘Medically Complex’ Is a Challenge

8. Not Having a Support System

“I’m separated and it’s been the most painful few months of my life, both emotionally and physically as I had to move into an old house. So much work, no help and no money to pay for help. I don’t tend toward depression but I know I’m going to spend the rest of my life alone dealing with fibro pain and arthritis and I’m scared to death! I’m 61. What happens when I can’t manage anymore?” – Lori M.

Coping tip:

“When your friends and family don’t understand or sometimes don’t even believe your illness and turn their backs or walk out of your life and leave you heartbroken — you are not alone. When even those who stay, who really love you, who really want to help and try hard to understand your situation, cannot grasp what you’re feeling, and you’re left feeling isolated and lonely in spite of all their efforts — you are not alone.You are not alone because I am right here, along with countless others struggling through the same trials that accompany chronic illness. We want to share our experiences and as a community, our support, so no one has to suffer alone. Look no further because as of right now — you are not alone.” – Kristen S.

Related:

• 8 Ways to Build a Support System When You Feel Defeated and Alone
• To the Person Feeling Isolated With Your Chronic Illness: You Are Not Alone

9. Being Unable to Support Your Family

“I’m 20 and engaged. I’ve always wanted to be a mother and I know my fiancé would be an amazing father. But I know that on my bad days, I couldn’t handle being a parent. Some days I can’t take care of myself, let alone another human. I’m really scared that one day we will have a child, and I won’t be able to be the mom the child deserves. Or, I won’t ever have a child, and we will both miss out on that amazing experience.” – Lauren H.

“My biggest concerns are not being able to do enough for my twin 5-year-olds. One of them has type 1 diabetes. Taking care of him has made my fibromyalgia life so much harder. Type 1 is very intensive. I also have a concern of not being a good enough partner for my husband. That is all on me. He is very supportive and kind.” – Angelina K.

Coping tip:

“I strive to maintain a positive mindset despite the pain or discomfort that may be overwhelming my body. I confide in my husband and family members as I have found open discussion aids greatly in my ability to reaffirm my value and worth. I practice positive self-talk daily and I fully embrace that although my life may not be the way I had hoped or imagined, I am breathing, I can see beauty in the world, and I am humbled and grateful for that! Fear overwhelms me many times, but I keep reminding myself that I am doing the best I can. I’ve embraced my illness and its restrictions and although they aren’t ideal, I have life and I am grateful for that.” – Tiffany G.

Related:

• How My Chronic Illness Affects the Roles I Play in My Family
• What It’s Like to Be Married to Someone With Chronic Illness
• 5 Ways You Can Support Your Partner Living With Chronic Illness

10. Being “Stuck” in Your Current State Forever

“I’m only 35 and haven’t worked due to fibro for four years. I haven’t won social security because of my age. I live with my parents. I worry that I’ll be stuck here forever, unable to provide for myself. I’ve been divorced twice, and I worry I’ll never find a partner who would be willing to take me on with all the challenges I bring.” – Jason P.

Coping tip:

“I literally take things moment by moment. I’m still newly diagnosed and thinking of things one day at a time was even overwhelming to consider. In a way, it’s a blessing instead of a curse because it has really taught me how to live in the moment and be mindful.” – Dakota S.

Related:

• When I Feel Like Everyone Moved On While I’m Stuck in My Life With Chronic Illness
• When I Didn’t Know How to Move Past the Shattered Pieces of My Health

11. Lack of Progress in Medical Research and Treatments

“How long before the U.S. catches up to treatment being done in Europe? And then how long before those treatments are covered by insurance? The one treatment (stem cells) that would help me is not covered by insurance here and it would cost me $35,000 to do it. I’m medication resistant so the usual treatments do not work for me.” – Kristina B.

Coping tip:

“Understand that life is uncertain, we do not know what the future holds and what medical advances may come in the future. Live within your limits but don’t accept every limitation you think you have!” – Skye C.

Related: 

• What to Look for in a Primary Care Physician When You Have a Chronic Illness
• How Doctors Should Treat Patients With Invisible, Chronic Illness

How do you cope with any fears or concerns you have for your future with fibromyalgia? Share some words of encouragement with our fibro community in the comments below.