Few things bring a smile to your face faster than a sweet text message from someone you cherish. We asked the parents of children with special needs in our Mighty community to share with us the texts they’d love to receive from their best friends. We received hundreds of responses — a testament to the power of simply reaching out.
Loved ones may believe they understand what their friends with chronic illnesses are going through. But unless they’ve lived with an illness themselves, they may not fully appreciate the challenges their friends are facing, from debilitating physical symptoms to the unpredictability of their health or the pain of feeling left behind.
We asked our Mighty communitywith chronic illnesses to share what they wish their friends knew about their lives. By offering a glimpse into their realities, they hope their friends will begin to understand how to be supportive and compassionate when plans get cancelled or when someone’s having a tough day.
Here’s what they told us:
1. “I wish my friends could know the real guilt I live with for having to cancel plans last minute. I couldn’t attend my best friend’s wedding because of my illness… We don’t have the luxury of getting a warning.” — Ashanthi De Silva
2. “I wish my friends knew there are no quick fixes, nor will I ‘get better soon.’ It takes a lot of effort to do things. Just because I can laugh doesn’t mean the pain, fatigue and nausea has disappeared. I just want to laugh.” — Kaisha Holloway
3. “It’s painful to know you are always looking through the glass at your life but can’t ever actually get in to participate. I don’t blame you for moving on — your life is busy, full and stressful. I never knew I could be jealous of that. I took that part of my life for granted.” — Jelea N Dan Ulberg
4. “Don’t give up on me. I still care about you and I still want you in my life — even when I have to cancel. If the tables were turned, wouldn’t you ask and hope for the same?” — Shiloh Davison
5. “I scrimp and save up energy to go to events. Everyone says how well I look or that I don’t seem sick. What they don’t see is the next week where I can barely get out of bed because I am recuperating from said outing. I think we all try our best to be present and happy when we are out; it’s uplifting to be with friends. But we do pay a price that most don’t see or understand.” — Elizabeth Prungel Casperite
6. “I wish my friends knew how very hard it is to ask for help, and that sometimes I don’t ask for help when I should. Thank you to the friends who step in when I need them, whether I ask for it or not.” — Julie Pruitt
7. “I don’t always like being alone. Come over, bring a coffee and a snack… let’s watch a movie. I miss you!” — Melanie Johanson
8. “Having to cancel plans is not something I like to do. I’m not trying to come up with excuses or avoid you, I hope I’ll feel better up until I literally cannot make it in time… I’m jealous of my friends who don’t have to worry about over-taxing themselves because they’ll have a flare up. I’m jealous of their independence.” — Sam Vargas
9. “Don’t forget about my partner! If you see him, ask him how he’s doing. In the background he is doing an incredible job keeping our family and house running.” — Jo Walker
10. “How important it is to be able to talk and vent to them about my health, even if the things I say are way over their heads. They don’t have to say anything, just listen (and maybe give me a comforting hug after I’m done).” — Laura Vago
11. “Just because I try to stay positive doesn’t mean I am all better.” — Kerri Lewis Brock
12. “I wish my family and friends knew how hard it is to get through a single day, every day! And those are the good days. There are days that even my mouth and teeth hurt… I would trade one year of a life with no (or less) pain for 10 years of living with this pain.” — Letticia Rodriguez
13. “I wish my friends (and family and coworkers) would understand that it is entirely possible for me to be way more exhausted than they are, even though I have only worked three part-days, not five full ones!” — Kimberly Matthews
14. “I wish they knew how different my life is from theirs. Not only do I have all the normal stresses of life, but I have to add in things like medication schedules, doctors’ appointments, pain and missed plans.” — Alex Kendall
15. “I wish my friends knew how much I love and appreciate them. When they check on me, understand why I always flake on them, and pick me up when I’m down, I can never stop thanking them. But I wish they knew just how thankful I am to have them in my life.” — Taylor Schmitz
16. “I value our time together, but it is very draining on me. I can’t hang out with you as much as I’d like, but that doesn’t mean I don’t love you as much as ever. Sometimes interacting on social media is all I can physically handle, but it makes me still feel close to you, and I appreciate every text, every post on my wall, and every funny picture you tag me in. I take comfort that I’m not forgotten.” — Darcy Krieger
17. “I wish people would not compare illnesses. It makes us feel minimized. That is isolating.” — Terry Weber
18. “There’s so much that goes on behind the scenes you’ll never know about. Medications, mobility aids, periods of total inability to do anything, and when I’m at home ‘resting’ it’s because I literally can’t walk. It’s not a fun time and I wish I could be doing a thousand other things. I’m not just having fun and having a day off.” — Elly Hartley
19. “I want them to know I’m still me. Just a version dealing with pain and fatigue on a daily basis.” — Carla Buckmiller
If you have chronic illness, what do you wish your friends knew about your life? Let us know in the comments.
As the parent of a child who is nonambulatory and nonverbal, I worry about how she’ll assimilate with other children as she grows. Will she be unconditionally accepted? Or might she be alienated? Will she have the opportunity to enjoy affection in a sincere friendship? In as much, I spend stressful moments in a state of angst, devising things I can do, or ways I can facilitate her integration with others. I try to do everything I can so I can enable just one single bond.
I’ve learned, however, that sometimes the best thing I can do as a parent is nothing at all. Settle down, stand back and allow the genuine innocence of other children to flourish in crafting a special friendship of its own.
Such is the lesson from a lively and delightful boy who celebrated his sixth birthday recently. I’ve learned he’s always keeping a tender eye on my daughter Linleigh at school. He visits her in her classroom, donning her with his artwork. He stands in the rain with her after the school day ends until he knows she’s picked up safely. And he worries about her when she doesn’t show up for school.
A short time ago he invited Linleigh to his birthday party. As we arrived, he welcomed her at the door with a huge smile and an eagerness to steal her away from me to push her around with his other friends. Just watching his candid exchanges with her, it was obvious he takes no pity on her and doesn’t feel sorry for her, but appreciates her for her.
Linleigh and her friend at his birthday party.
At one point in time I lost sight of the two of them. I peeked around the facility and ultimately discovered just the two of them alone together in silence, sharing a view from the big windows. He had rested his leg on the wheel of her wheelchair and held an arm around her head, oblivious to the medical equipment between them. Though no words were spoken, I feel they shared so much with each other. And at that moment I was reminded not to ever underestimate the boundless love of a child’s very essence. I vividly began to understand that my daughter will have genuine buddies. She will enjoy authentic friendship. She will be loved.
The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
I’m forever changed, and I’m not so sure that’s a bad thing.
Just the other day, I sat and listened to someone tell me that when they worked in a special education class it “wasn’t that bad.” That the kids were only pulled out for Language Arts and mainstreamed for the other classes. She went on to tell me that when she worked in the more “severe” classrooms where the children are “all like,” [mimics with her body what she must perceive someone with special needs to look and sound like] she “didn’t understand it.” I think I was just stunned by what was being said to me. Despite what I think my face must’ve looked like, she continued and stated she didn’t understand the reasoning behind those children with “severe” intellectual disabilities having teachers read books and sing songs to them. She didn’t see the point.
As my skin began to crawl and my blood boil, I wanted to say something terrible, like, “So what should we do with those children?” But I didn’t bait her anymore. I decided to educate her. I decided to tell her that some people with significant physical disabilities function cognitively at the same level as their peers and genuinely enjoy hearing songs, stories and learning from their teachers — and although they can’t always show it, learning is occurring. I also wanted to say, “And what if those children were believed to be incapable of understanding? How do we know for sure? What is the harm in enriching those children’s lives with music and literature?” I wanted to then divulge my own story, to tell her how I was told my own daughter was not capable of understanding, speaking or learning like “a normal child.” Needless to say, I didn’t. I wanted to, but I didn’t.
These types of interactions make me sad at first. Naturally, how could I not be? Some people still feel this way about children with special needs. Some people still don’t understand how far we’ve come in our beliefs of what children can do and what they are capable of. I often think to myself, would these people make such comments if they lived with a childhood disability themselves? If they had a child with disabilities? If they lived a “normal” life and then their mental capabilities changed? I don’t believe they would.
My feelings towards the negative views of special needs and the education of children living with these needs have changed drastically. Instead of becoming enraged with these people, I choose to educate them. I choose to share stories of children I know and my own. I choose to ground those people with comments like, “That must be so trying on their parents and families.” Not a burden in any way of course, but all of the extra challenges that occur daily for a special needs family can take a toll on all.
You see, once you’ve sat in a room with a neurosurgeon who has told you your child isn’t aware she’s living and is incapable of development in her current state… that kind of horrific meeting can change a person, and change them forever. Was I always sensitive towards children and people with special needs? Actually, I believe I was. But my own experience and those of the families and friends I’ve grown to know in the special needs community have forever changed me. I see everything differently. That child at the store everyone is staring at. I smile at the mother and offer a nod of understanding. That child at the restaurant who randomly shouts or screams but looks “too old to be doing that.” I smile at the mother and give her a nod of understanding. That child who smacks my child at the park because she got too close to him or her? I smile at the mother, the one who is currently looking mortified and contemplating packing up and leaving the park altogether and give her a nod of understanding. Something may be going on. Yes, you sometimes have naughty little kiddos who act up, but there can often be unseen things going on that we can’t know. In those instances, I ask that you extend kindness to those people and try not to judge. Try to choose kindness. Choose hope. Don’t merely try to appease these people, but welcome them. Accept them as part of your community.
If we can get to a place where we do this, where we don’t label children, where our kids go to school together — in a classroom in which you have all children with varying intellectual and physical needs — then I think we will have progressed as a society. Stop telling parents to institutionalize their children. Stop flagging kids with special needs and segregating them. Support the schools and teachers with the resources and training they need.
Stop stigmatizing special needs. Just stop. Take a step back and see this. Those are children. They are all children who were birthed by mothers who love them and want nothing more than their lives to be as easy as possible.
The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded.If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
A chronic illness diagnosis doesn’t only affect the person experiencing the illness — it can also change the life of the person he or she is in a relationship with, as well as the dynamics of the relationship itself. As two people navigate one partner’s chronic illness, their love, communication and commitment may be tested — for better or worse.
To someone who’s partner has just been diagnosed, or to a person just entering a relationship with a chronic illness patient, the uncharted waters may seem daunting. To learn more, we asked our Mighty readerswith chronic illness to reveal the most rewarding, challenging and maybe even unspoken parts of being in a relationship while chronically ill. Their answers are honest and raw, but one truth remains: everyone deserves to be loved.
Here’s what they told us:
1. “Chronic illness will test the vow ‘in sickness and in health’ and can either make or break a relationship. To grow despite the burden of chronic illness takes nurturing each other even when the care seems lopsided.” — Danielle Myers
2. “Being in a relationship while suffering from chronic illnesses really shows how much that person cares. Even in friendships. With chronic illnesses, it is hard to plan ahead and follow through on plans, even if you really want to do it. You never know when you will have a bad day or when a good day will go bad. It takes a special person to truly understand and be OK with how unpredictable we may be.” — Erin Ann
3. “It’s like you have all the stresses of a regular relationship — then multiply that by 100! Everything is intensified, magnified… And I need friends and family, because a spouse cannot be everything to you. You need to be able to vent and talk to others who understand, too.” — Christina Marroquin-Mauricio
4. “Sex life? What’s that? Chronic illness will shove intimacy to the back burner. It’s hard to want sex when you feel like a semi has not only hit you but dragged you behind it a few miles… on a regular basis.” — Selena Marie Wilson
5. “I wish people knew that when we make it out to an event or a gathering with friends, it requires planning together and pushing through fatigue and pain. If you see us out, our smiles are a little brighter because we’ve been able to communicate and understand each other. We hold each other’s hands a little tighter because we know how lucky we are to be together and experience another day.” — Ashanthi De Silva
6. “No matter how many times he tells me he loves me, I worry one day I won’t be adequate enough. I worry I will hurt or disappoint him. I worry I will get worse and even though he says he understands, I fear one day he won’t.” — Tara Lynn Knutsen
7. “I’ve been with my boyfriend three years and only got sick last year; however, I no longer feel beautiful. I love hearing him say it. I need to hear him call me beautiful and still compliment me like he did before I got sick!” — Michelle Rachel
8. “It’s not just about ‘being supportive’ in the abstract sense. I’ve had to ask my husband to help me get off of the toilet, to put on my shoes for me, to drive me hours to appointments. Saying you are supportive is hugely different than being willing to deal with the ins and outs of being caregiver to your spouse.” — Danielle Kristene Clapham
9. “I love having a partner who doesn’t think of every visit as ‘a doctor’s appointment,’ but understands that a re-check can be anything from a casual 20-minute conversation with my doctor to a 4+ hour-long diagnostic procedure. He adjusts his support level for each visit, knowing when I can handle it and offering extra help when needed.” — Sarah Moore
10. “I wish people knew plans cannot always be kept. My illness does not care if you have made dinner reservations or planned a weekend away — it will still flair up!” — Patricia Chamberlain
11. “My partner asked a lot of questions and made it a point to learn what my needs were in the beginning… I’d want people to know that we want people to ask. It’s hard to volunteer information, but sometimes it’s a lot easier when someone asks. I appreciate having a dialogue and feeling like the other person cares about being there for me despite my illness.” — Ariel Nicole
12. “It’s amazing when your partner becomes your advocate! I’ve had gastrointestinal pain and problems since middle school, but I didn’t get a diagnosis until I was in the first year or two of dating my husband almost six years ago. He was there with me, learning from me and with me, and now when I don’t have it in me to explain to friends why I can’t join in, or why I can’t eat something or have to leave early, he speaks up for me. He is also my advocate in that on days when my body is telling me I need a break.” — Jessie O’Brien
13. “Underneath it all, I am still me. Chronic illness does not define the person. Someone dealing with chronic illness still needs and deserves love and affection.” — Kelcey Wells
14. “[I feel] so much guilt about not being able to do things or go places. I miss family and friend functions and therefore sometimes so does he. He is a thousand times supportive, but sometimes I wish we could have a ‘normal’ relationship where mobility is not a factor and I could be a ‘normal’ girlfriend.” — Elly Hartley
15. “I think it’s important for others to realize how hard it is to watch our loved ones struggle with our illness as well. They feel just as helpless as we do as there isn’t much they can do to help us except to be there with us through it all. That loss of control hits both parties hard.” — Kat Bradley
16. “Patience is so important. You both have to learn how to manage this thing together. Try to always be open about what you are actually going through, so your partner understands the real you.” — Jessica Kelley Moye
17. “For me, it’s trying to balance having a partner, and having to call on them to be a caretaker. I always fear I’m not doing my part and being an equal in my relationship.” — Brigette McKern
18. “The hard part is when you talk to your significant other about what symptoms you’re having and they think you’re joking with them. Taking the time to really educate yourself as a partner is critical for understanding.” — Nikky Lynch
If you have a chronic illness, what’s one thing you wish people knew about what it’s like to be in a relationship while dealing with your illness? Let us know in the comments.
Yesterday I was the woman who walked into Target looking tired and rushed, placed her child in the shopping cart seat and, seemingly for no reason at all, began crying.
Thankfully, I was also the woman who didn’t put on makeup that morning, so I wasn’t the woman who walked around the store with streaks of mascara running down her face.
What wasn’t clear yesterday, if you were the man watching me (but trying to look as if you weren’t watching me) and wondering what was wrong, was the tiny voice I heard that brought tears to my eyes.
Let’s back up.
I was running late yesterday morning.
I find myself running late a whole lot of the time these days. I suppose I’m finally making amends for having spent the vast majority of my life being chronically (and impatiently) 15 minutes early for everything.
I’d slept far less than I should have. There was barely time for one cup of coffee. And I needed to stop for diapers for my daughter, Esmé. Because there were like three left. And that, my friends, is a recipe for disaster.
So we left early for swimming therapy. We had just enough time to pop into Target.
Pulling out a red shopping cart, I said, “OK, Ez, here we go.” I lifted her into the shopping cart seat while struggling with her legs, which are far too thin again after her recent illnesses, as they moved haphazardly every which way other than into the leg holes.
As I was doing this, I heard the tiny little voice of a child at the cash register talking to the attendant. I couldn’t see this child; she was hidden from my view by the counter and the laws of perspective. But I could hear her. She said proudly and clear as a bell, “I am 5 years old.”
And my heart shattered into a million pieces right then and there, because I heard this child, and for just a moment, I imagined it was Esmé speaking. She is, after all, 5.
For a moment, I allowed myself to imagine what it would be like to hear my daughter speak. The kind of fluid, weird, stream-of-consciousness exchanges that characterize the speech of many 5-year-olds. Not just an exchange of information, but the sound of her little voice forming the words — such a simple thing.
And yet, such a complicated thing: The muscles, the coordination and the motor planning involved are nothing short of astounding when you stop and think about it.
So, I stood there in Target and let that sadness wash over me until it passed. It’s a thing I just have to do sometimes. And when it passed, Esmé and I just went about our business. Frankly, I sort of forgot about the whole thing until the next morning.
The next morning, I was packed and ready to head out on a short overnight trip. I was so pleased that Esmé woke up a few minutes before I had to leave, so I could kiss her and remind her she would see me again soon. She was still looking pretty sleepy when her father carried her out of her room to say goodbye, but she turned in his arms and looked at me. I could tell she was taking in the fact that I was dressed to leave — with hair and makeup done. She put her hands up in my direction and said in the littlest, sweetest voice I have ever heard, “Aye, Mum mum.” Hi, Mama.
“Hi, Mama,” I repeated back to her, to acknowledge her words. “Hi, Mama. Hi, Esmé.”
I felt those tears working their way up again — my heart shattered again. And I wondered how I could have ever imagined her words any other way. Because if those are the only words she ever speaks, they will be more than enough.
The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.