15 Common Types of Fear People With Chronic Illness Experience (and How to Cope)
Chronic illness can come with a lot of challenges, and not all of them are physical. The mental and emotional challenges that come along with chronic illness can be hard to navigate – particularly fear.
Having fears is a totally normal aspect of having a chronic illness. These can be fears about a lot of different things: fear of the future, fear of being a burden, and so on.
One of the hardest parts of having these fears is learning how to cope with them. That is why we asked our Mighty community for a fear they experience and how they cope with it. If your chronic illness has ever caused you fear, know you are not alone.
Here is what our community shared with us:
1. Fear of Not Being Able to Support Yourself Financially
“I fear not being able to work and support myself.” – Jenny J.
“The biggest fear is definitely no longer being able to work and support myself financially. Being a single individual, this is a very real fear.” – Amber S.
“Don’t underestimate someone who isn’t able to work, and/or who has certain limitations due to disability and chronic pain. If you have a disability and/or chronic pain, don’t underestimate yourself. We all have limitations, we all have talents and we all certainly have a purpose.” – Elaine R.
“Find a small pocket-sized notebook or journal for keeping a gratitude list. Commit to writing down at least one thing a day you are thankful for or something that brightened your day… It reminds me I have more in my life than just illness.” – Kami L.
- I Can’t Work Because of My Illness, but I’m Still Valuable
- When Your Body Can No Longer Support Your Need to Work
- Finding the Strength to Support Myself in My Battle With Illness
2. Fear of Making Plans
“I experience fear every time I make any kind of plans – how will I feel when the day comes around? Will I have to cancel? Will my body let me down? Will my friends be angry if I cancel?” – Lorna M.
“Fear that making long-term plans is pointless because I never know when I’ll get sick next.” – Gabriella L.
“I prepare for tomorrow as much as I can do reduce my anxiety the next day. For example, I’ll make sure my outfit is picked out already, the Keurig is pre-filled with water and everything that needs to be done by tomorrow is finished already. That way I’m not scrambling in the morning for fear of being late.” — Kyla M.
“I just try to acknowledge the fear, plan as well as I can and take a leap of faith when something really matters to me, or get help if I can’t do it alone. It’s one of the parts of chronic illness that most people would never think of.” – Chris R.
- 15 Things Friends Don’t Realize You’re Doing After Your Illness Makes You Cancel Plans
- What to Remember When I Have to Cancel Plans Because of My Chronic Illness
- 16 Reasons a Person With Chronic Illness May Cancel Plans
3. Fear of What the Future May Bring
“So many things… Recently I fear most for my future. My health/body has already gotten so bad, and no treatment/medication has worked yet. My joints and problems just keep getting worse. So, I fear very much for my future. If I’m in this condition at only 28 years old, what is my life going to be like when I’m 38?” – Rebecca J.
“I’m afraid of the future. When I think that I will be in this much pain for the rest of my life it terrifies me. This daily struggle is so hard and thinking of it stretching out in front of me for years and years fills me with dread.” – Jayne D.
“I usually cope by trying to take each minute as it comes and breaking things down into small manageable pieces.” – Jayne D.
“I absolutely need to be brave. I need to live every moment with a joyous and thankful heart.” – Jessica P.
“Laying on the floor. It helps me feel ‘grounded’ in a literal sense. I need to become grounded and muster up the strength.” – Kara M.
- How I Push Forward When the Fears of What My Illness ‘Could’ Do Hit Me
- Fearing the Uncertainty of My Future With Chronic Illness
4. Fear of Not Being Able to Break the “Chronic Illness Cycle”
“When your body is attacking itself your flight or fight response is turned up to the loudest setting and every decision you make feels like it has life or death consequences. But, when you can’t run from your own body and can’t find the right med combo to fight back your spirit is in danger of breaking. Anxiety changes your brain waves and a vicious cycle begins. I fear I might not be able to break the cycle.” – Jessica G.
“Anxiety type fear… can’t sleep because of migraine pain, which makes me fear not being rested/well enough to work the next day. Vicious cycle.” – Michelle R.
“I take a shower. It sounds simple, but it’s something I have complete control over while my mind and world are in chaos. I control the pressure. I control the temperature. I control when it ends and it begins. It’s a grounding/coping mechanism I have used most of my life.” – Brittany K.
“Arm yourself with knowledge and invest in tools that make life easier.” – Loura L.
“I buy a stack of cheap glass plates whenever I am out and when I am anxious or angry or depressed, I write everything that is on my mind that I want to let go of on the plate with a sharpie. Then I take the plate outside on the concrete and smash it into tiny pieces. The breaking is very therapeutic for me and the fact that all of my frustrations a visually broken in front of me brings me a sort of relief.” — Kristin B.
- How Chronic Illness Has Turned My Life Into a Relentless Cycle
- How to Break the Cycle of Chronic Illness and Anxiety
5. Fear of Being a Burden
“Fear of becoming a burden to my loved ones and not being able to take care of myself.” – Melissa A.
“[I fear] being a financial burden on my family. There is no way I can help it. Every one of us with prolonged or chronic illnesses feels the financial stress of our medical care… I remind myself of my feelings if it were someone else in my family that was sick and not me. I would want them to take care of themselves no matter what.” – Danielle M.
“I try to ground myself by reminding myself that I’m more than my illness, even though some days feel the contrary and those who truly love me will see past my illnesses and love me just as I am.” – Danielle M.
“If you are feeling useless and guilty about needing help to manage an incurable disease, don’t be so hard on yourself. Chances are, the only one who feels like it is a burden is you. You are not the same person you were before you were diagnosed and you shouldn’t act like you are. Being kinder to yourself is a great medication and by taking the time to take care of yourself, you can help ease your mind of these harmful and unnecessary feelings.” – Kelly G.
- The Daily Struggle With Chronic Illness and ‘Chronic’ Guilt
- To the Person With a Chronic Illness Who Feels Like a Burden
6. Fear of Starting New Relationships
“I’m afraid of dating and getting into a relationship. I don’t like to deal with this illness myself, I feel like putting this life on someone else is just mean. Or asking someone to accept it isn’t fair to them.” – Mallory M.
“I’m honestly scared to make new relationships. The isolation is harmful enough but [I fear] no one really wants to keep someone company who is shut inside or admitted in the hospital.” – Heather Y.
“My only option is to be more proactive about making new friends who accept/understand my disease. I do rationally know my family and husband will always love me, so I try to remind myself of this as often as possible.” – Christy H.
“Being open, honest, and clear with others about what I need/what is going on. I have found most people are extremely kind and ready to help, but they don’t always know what to do or say until I break the ice.” – Loura L.
- 3 Pieces of Advice for Dating With a Chronic Illness
- The Challenges of Dating When You’re Chronically Ill
- Would You Date Someone With a Chronic Illness?
7. Fear of Being in Public
“When I’m in public I’m often afraid of people touching me or bumping into me, because I get so sensitive that a touch causes horrible pain. I’m also afraid of the embarrassment of falls in public as well. I fear running out of energy and not being able to make it back to the car. At least when I’m at home the bed is right there so I can collapse if I need to. No one can see my falls, and I don’t have to deal with crowds where I might get hurt.” – Crystal F.
“I experience fear every time I go out in public, because at any given time I’m going to have to rush to the restroom. Will there even be one accessible? Will I make it there in time? Did I bring my emergency underthings pouch? Are people going to stare at me as I rush? I cope by always carrying a pouch of necessities; underwear, pads, adult diaper. And I make sure that I know exactly where we are going and where every restroom is beforehand, so that if I do end up needing to rush to one, I’m not panicking because I don’t know where it is.” – Bonnie P.
“Ordering my groceries to be delivered. I can place the order in the middle of the night if that’s when I’m awake. It’s easier with brain fog to go through my list and not miss things when I can just search the item. And of course the added help of not having to walk, carry bags and have that much stimulus overload.” – Leanna K.
“I repeat my motto: ‘I don’t like it, but it’s OK.’ It helps me work through uncomfortable situations.” – Brittany A.
“I pre-pack a little zip bag with things I need for going out. I know it’s got everything in it so I can grab that and go. At the moment it has spare pain meds, sunglasses, earplugs, snacks (usually nuts), charged battery bank and charger, handkerchief (for crying, or to hold up if there is a strong smell), spare makeup, headphones, little notebook and pencil. I grab that, make sure I have my phone, and I’m all good to go.” – Meg H.
- The Anxiety of Leaving My House as a Person With Chronic Illness
- 24 Things to Put in Your Chronic Illness ‘Crisis Kit’
8. Fear of Losing Your Support System
“My biggest fear by far is if something happens to my mom. I would literally be dead without her and I would be in a lot of trouble if I lose her.” – Kat A.
“Fear one day it will be too much for those around me and they will leave.” – Emma D.
“I fear something happening to my husband and I won’t be able to survive on my own both financially and just physically getting around.” – Tamara S.
“When we are able to spend time together, I cherish every moment and make beautiful memories out of those moments.” – Stephanie P.
“[Being] grateful. Grateful for the small moments, the glimmers of hope, and in those moments you surge with everything you have. In those moments, I tell him how much I appreciate and love him. I support him when he needs it.” – Hannah H.
- What I Remind Myself When Anxiety Makes Me Fearful of Losing the Ones I Love
- The Worst Part of My Illness Is Feeling Like a Burden on My Husband
9. Fear of Dying
“I’m in constant fear that I’m going to get sicker and die, and that there won’t be anyone left who’ll love and care for my son. And I know that at 23, I shouldn’t be worried about my death, but I’ve almost died from this crap several times before. It’s just too real of a possibility.” – Rachel K.
“I fear a slow descent into death. Not because I fear death… but because I don’t want languishing from my complications to torture my loved ones as they watch me unravel. My greatest fear is hurting, worrying and traumatizing those closest to me.” – Liz W.
“I breathe. And I hope. And that is all I can do. That has to be enough.” – Sarah W.
“Having some fresh air outside while driving slowly with windows down, stopping by anywhere I feel safe and calm. If I’m not crying, I call someone who I trust just to talk about their day and make them feel better if possible — it gives me positive vibes. The night wind that crawls to my skin makes me feel like I’m actually living.” — Anis S.
10. Fear of Losing Yourself Due to Illness
“I’m afraid of losing myself. Who am I, if I’m too sick to do the things my spirit longs for? What is my purpose, if I am no longer capable of doing the things my heart beats for? How do I refuse to let my illness define me, when it prevents me from being me? Most days, I look in the mirror and see a stranger staring back, and it scares the hell out of me.” – Melissa H.
“[I fear] I will become so self-involved with my own illness, that I forget to care for others and to be grateful.” – Diana B.
“Fear of giving into my illness and living an unfulfilled life.” – Hannah W.
“Movies and/or TV shows. I used to always get teased for how much I was invested in them, know actors’ names etc. But there’s something about escaping reality, not being engulfed in my own thoughts for just a few hours, maybe a whole day.” — Abbie K.
“Remember you are not defined by your illness. Living with a chronic illness can be all consuming. It takes over your life and it’s often hard to differentiate between your illness and the real you. You are still the same person you were before you became ill, you just have a few additional challenges to deal with.” – Jo M.
- 15 Steps for Taking Back Control of Your Life and Your Health
- When You Fear You’ve Lost Yourself to Your Chronic Illness
11. Fear of Not Achieving Your Goals and Dreams
“Fear of failure… I’m seriously considering applying for graduate school to get my MSW but fearing I’ll fail due to my chronic illnesses and not be able to finish has been holding me back for ultimately applying.” – Melanie V.
“I want people to know failure is normal and it can be overcome. If you fail once, that does not mean your life is ruined, it is possible to recover.” – Michael H.
“Coming to understand every little thing is a process. Every day is a process. I am better about letting things go; I do my best every day and that is all I should expect from me or anyone else. I still love my lists and plans, but am much more flexible about the deadlines now.” – Loura L.
“Be gentle with ourselves and intentional with giving our soul a daily dose of nourishment. I hope you remember you are strong and brave for fighting day after day.” – Kami L.
- When Your Life’s Timeline Is Interrupted by Illness
- My Hopes and Fears for Setting Goals While Living With Chronic Illness
- When Chronic Illness Stopped Me From Living the Life of My Dreams
12. Fear of Not Being Understood
“I fear being seen as someone with hypochondria. I know my body well, I don’t limit myself, but I also know when something hurts or is damaging – then I need to stop. However I fear others will think it is an excuse or laziness.” – Katie A.
“Fear of being dismissed by ignorant doctors.” – Farzana K.
“Advocacy is vital for survival. We must voice our concerns and encourage medical personnel to look in different directions for treatment.” – Laura R.
“We have to talk about it. We have to consider those who are yet to come, who will join us on this journey. We wouldn’t wish an isolated and murky life for them. We wouldn’t want them to endure the uneducated, but ‘well-meaning’ comments that can complicate their journeys unnecessarily.” – Tab M.
- Why I Don’t Think Healthy People Will Ever Understand Chronic Illness
- 12 Suggestions for Advocating for Yourself as a Patient
- Why We Have to Talk About Our Illnesses
13. Fear of Your Illness Progressing
“Afraid of getting worse and not being able to take care of myself or work or travel or be able to finish school.” – Grace D.
“My illness started 24 years ago. It became severe 15 years ago. Even after all these years I still have the fear of getting worse.” – Denise E.
“Each and every time my disease progresses or I finally have to give in to another loss of abilities, I have to accept my new self. And that’s OK. Because it’s actually a process everyone should go through as they age. It’s just that healthy people can try to avoid it or put blinders on while I cannot… At some point, I’ll realize it’s hard enough fighting this monster of a disease, I need to stop fighting my mindset about it as well.” – Sharilynn B.
“If those of us living with chronic, progressive illnesses focus on our uncertain future we miss out on our life in the present. It can result in depression, isolation, and loss of hope. We must remind ourselves that we have a choice to make. We can give up, or we can choose to accept our limitations and focus on the abilities we still have… I don’t know what my medical future will look like, but with the support of my family and friends I will continue to live, love, and look to the future with strength to carry on.” – Marie H.
- My Fears as Someone With a Progressive Illness
- Accepting My ‘Failures’ When My Disease Progresses and I Lose Abilities
14. Fear of Not Being Able to Be the Parent You Want to Be
“My fear is that my illnesses will make it so I can’t play with my daughter as she learns to run and play but I just keep my strength up and know that I’ll do everything I [can] for her.” – Kathryn H.
“Fear of not being able to give my children the childhood they deserve due to my health and physical limitations.” – Karen J.
“I’d like to think that being the child of a parent with a chronic illness has helped my children. I think that they’ve had to learn more about compassion, patience and what love truly means. It means that ‘stuff’ is never more important than the time we spend with each other. It means that the calendar is just a piece of paper with numbers. Sometimes the birthday dinner we are having happens before or after the real date. You’re careful with your words because sometimes when you’re not feeling good? It comes across wrong. So you also learn to say I love you, I’m sorry, thank you, and forgive me.” – Heather M.
“Having my son helps me to focus on him instead of my pain. I will push myself a bit more to be there for him. Sometimes I feel guilty when I can’t do the things that I want to do with him but he hugs me and says, it’s OK, you’re an awesome mom.” – Amy R.
- Coping as a Chronically Ill Parent
- The Truth About Being a Parent When You Have a Chronic Illness
- A Glimpse of Parenting With a Chronic Illness
15. Fear of Being Alone
“I fear that I will be alone. I fear that no one can handle the unending suffering to which there is no solution. I know it is hard to watch a loved one suffer and do nothing, but it is even harder to be the one suffering alone.” – Renee S.
“I’m afraid of being forgotten. I’ve lost friends because of my illness and I’m rarely the one being contacted for a hang out. Even my parents and other family members look on me with a slight bit of disdain because I’m an entirely different person now that I’m sick. If my husband ever got tired of caring for me, I have no idea what I’d do.” – Christy H.
“Retrain your inner self talk to become more positive and rational. This can be done with the help of a therapist and over time, can be changed.” – Amanda P.
“I’m lonely but I’m learning to accept the lingering sense of ‘no one will ever get it’ and allow those who take the time to try an opportunity too.” – Britt R.
“I am not as alone as I feel. I must recognize that my illness will make me feel even more alone than I am in reality. I can also control some of my loneliness by knowing some of the best friends to make are others who are chronically ill.” – Eileen D.
- 8 Ways to Cope With Loneliness and Isolation When You Have a Chronic Illness
- The Unique Type of Loneliness That Comes With Chronic Illness
- The Loneliness and Isolation That Have Set in Since My Chronic Illness Diagnosis
The fear associated with living with chronic illness is completely real and common. If you have experienced it, know you are not alone. We hope these words of advice from others who have been there can be helpful the next time the fear starts to creep in.