When you’re dating someone with spinal cord injury [SCI], it can be difficult, to say the least. Although each spinal cord injury has some commonalities, they are not the same for any two people.
Those who suffer from an injury and anyone who’s dating someone with spinal cord injury say the pain is very real. Some spinal cord injury patients still feel sensations, heaviness, cramps, and twitching. The twitching or movements are strictly involuntary.
The patients also experience muscle spasms in the feet, toes, and hands. The spasms come at any time of day or night but more so as they are lying down. They feel like their body weighs a ton or specifically, like an elephant is sitting on them.
You wouldn’t think they can feel but the pain is severe for someone who can’t move their legs.
You see, the nerves in our bodies communicate with each other. They send signals to the brain when another part of the body needs to scratch, move quickly or even have a bowel movement.
The nerves keep trying to convey messages to each other, but when they can’t, the blood pressure goes up. In fact, it can get high enough the situation could be life-threatening. According to the WebMD, this condition is called autonomic dysreflexia.
Signs of Autonomic Dysreflexia and How to Handle It
Besides dealing with the fact the thoracic nerves aren’t getting proper signals when they need it, there’s autonomic dysreflexia. What is it and what are the signs? How do you know it’s autonomic dysreflexia? Well, the signs include –
Red blotches on the face and arms [above the injury]
Goosebumps [below the injury]
Clammy skin [below spinal cord injury]
Pressure followed by muscles spasms
Sweating [above spinal injury]
Bradycardia [slow heart rate]
A massive headache
If these symptoms are not handled the right way or if left untreated, it could lead to having a stroke. One patient reported feeling a near death experience because of autonomic dysreflexia. He describes it as an extremely aggravated and excruciating painful sensation.
What Causes Autonomic Dysreflexia?
Patients who experience autonomic dysreflexia say they can tell when it’s about to happen. They have “that feeling.” Call it intuition if you will, but it’s not a good feeling. What causes it?
It can be because the bladder is overfull, a urinary tract infection [UTI] or constipation. [There’s a program in place for patients regarding body functions that the caregiver must follow.]
Ingrown toenails, tight socks, tight fitting clothes can set it off as well as stomach ulcers, gallstones or gastritis. Unfortunately, adult time or sexual stimulation or arousal can trigger the condition. But that’s just the tip of the iceberg for people with spinal injuries.
When it happens, individuals feel desperate because they are helpless. Being completely paralyzed, nothing works and when you’re alone, having autonomic dysreflexia can be terrifying. If you’re dating someone with spinal cord injury and autonomic dysreflexia happens, you should:
- Raise their heads so they are looking straight ahead or sit them up straight
- Lower their legs if possible and keep them there until their blood pressure returns to normal
- Take off any restricting clothing like bras, shoes, braces, bandages or socks
- Check for pressure sores or red spots on the skin
- Get a blood pressure reading
- Drain bladder and empty bowel
- Call the attending physician but if dysreflexia returns, go to the emergency room for treatment
When you have a spinal cord injury, these episodes are likely to happen and when they do, you feel like a burden. On top of that are the every day feelings and emotions like helplessness, fear, frustration, depression, and embarrassment. There are times when you feel violated even.
In these times, try to stay positive and strong. Support and guidance are of the utmost importance now for you both, so don’t be afraid to reach out. When you’re married or dating someone with a spinal cord injury, it’s difficult to know what to do or even what to say.
What Not to Say to Someone Who is Paralyzed
Dealing with someone who has a spinal cord injury generally comes with confusion and an overwhelming sense of insecurity. Understandably, the arguments and charged emotions come directly from the situation.
The inability to get out of the wheelchair, especially when the paralysis is new, is highly frustrating. There are so many emotions floating around a person’s mind, including the same stuff as if they weren’t in a chair. We all have a certain amount of daily stress and paralyzed people are no different.
What do strangers do that bother people with a spinal injury and what to say to encourage them? Not thinking, we can say and do some dumb things. Sometimes, the things we do, don’t go over so well although we’re just trying to help.
If you have spine problems, are disabled or know someone in a wheelchair dating someone who isn’t, you should know how to talk to them and how to help them. Well, keep reading to find out what not to say to someone who’s paralyzed first.
Some People Say the Weirdest Things
- “You’re too pretty to be in a wheelchair.”
- They talk to you like you’re dumb or illiterate.
- People hurry to help when it’s obvious the upper body works.
- They say, “I had to be in a wheelchair for a while. I know what it’s like to be you, bruh.”
- They comfort us by saying “there are no accidents in life.”
- “I wish I had an electric wheelchair to get me around.”
Yeah, people actually say stuff like that. It’s weird to hear and it can be a reminder of how careless people are. I mean, do you mean only ugly people should be in a wheelchair? And we just met, how do you know what’s it’s like to be me? Um yeah… just crazy stuff.
Although people are trying to help, sometimes what people do, doesn’t really help someone in a wheelchair. If an able-bodied person INSISTS on helping someone in a wheelchair, it disrupts the planned system. The disabled person must learn to accomplish the task alone.
Someone with a cervical spine injury can still function, but people treat them as if they can’t and this is what they find insulting. Most disabled people have had to relearn the norms in a new way so let them do what they need. If the person in the chair asks, then oblige them, but don’t assume. 🙂
Unless the person is flaccid quadriplegia, meaning they are entirely dependent on help, then always be respectful and ask if there is anything you can do to help.
How to Care for Someone with Spinal Cord Injury
Dealing with the public is just half the battle. Some people are just silly. If you’re dating someone with spinal cord injury, you need to know a few things, including how to handle [ignorant] people so you don’t blow your stack.
You’re Going to Need Patience
When you’re dating someone with spinal cord injury, be patient. They are going through a lot right now. Mind you, a lot of people are going to give you their two cents. Some of these people don’t have any experience at all with disabled dating so talk to the experts to get helpful relationship tips.
Don’t Give Up
There may be times when you and your boyfriend or girlfriend will want to quit, but be persistent. This is not the time to forsake a loved one. They may holler at you and say some hurtful words, but don’t let it get under your skin. Keep trying.
Being handicapped, their lives have changed. It’s natural they are angry and resentful. Be a friend and don’t give up on them.
Do You Pray?
Not everyone believes in the power of prayer, but I do. If you do, too, then pray for understanding, guidance, and strength.
Ask, Don’t Assume, What Can You Do
Many of us just assume the person in the wheelchair wants us to hold the door open for them. I mean, if they were going in while you’re coming out, sure… okay, open the door.
However, you felt the need to come from across the room to open a door they could have opened themselves. They feel you’re totally being rude and insensitive to their needs. Again, you thought you were being helpful, but they could open the door on their own.
Dating Someone with Spinal Cord Injury? Start a GoFundMe Account
Probably one of the most important things you can do if you’re dating someone with spinal cord injury is to help raise money. If you guys are serious about sticking to your relationship goals, now would be a good time to do review and carry out.
The loss of income, plus the added expenses of spinal cord injury treatment can add up rather quickly. You will need to buy a vehicle specially equipped to handle the equipment. An adapted vehicle can run upwards of $80,000, not to mention you now have to upgrade the home.
Chances of one person handling everything alone are not so great. Your partner’s entire life has changed, and consequently, so has yours. Come up with an agreement you both are comfortable with and do it.
You probably didn’t sign on for this, but the unexpected happens to the people we love. When you’re dating someone with spinal cord injury, taking on this responsibility will bring a piece of mind for the injured person. Their focus can be more about recovery.
The road to recovery is a journey for more than the immediate family. There are plenty of professionals who walk the line with their patients every day. Paralysis recovery specialists are the ones who help people with spinal cord injuries get back a part of their lives.
11Ahleven talked to Paralysis Recovery Specialist Tony Davenport about his daily grind at NextStep Atlanta Paralysis Recovery Center. He shares with us the real story on what’s it like to be a spinal cord injury patient, what couples experience during spinal cord injury rehabilitation and his position at NextStep Recovery Center.
Interview with Tony Davenport, Paralysis Recovery Specialist
Mikki: Hi, Tony… I’m glad you agreed to do this interview. It’s important we bring attention to issues such as dating someone with spinal cord injury, the injury itself as well as the treatment.
There’s no better person than a spinal cord injury recovery specialist to provide us with some much-needed insight so we help couples cope with a trauma of this nature.
Tony: Thanks for letting me be a voice for paralysis recovery, Mikki. I’m hopeful this will help someone who’s looking for answers. More attention should be given to this issue as support from the paralyzed person’s loved ones has a huge impact on a patient’s recovery.
The whole ordeal is difficult and but when you’re alone, it’s another obstacle the patient has to deal with. Someone with a new injury doesn’t know what to expect, so this can be a very disturbing time.
Not only for the injured person but for their loved ones and immediate family. Having someone there for them when they leave therapy is always comforting compared to coming home to no one to love. In this aspect, dating someone with spinal cord injury is comforting.
Mikki: What can a husband or wife [significant other/caregiver] expect caring for someone who is paralyzed? I bet it can be mentally and physically draining.
Tony: Based on the years of conversations, the husband or wife feels overwhelmed… they feel anxiety, and they get very little sleep. Because of this, they suffer from fatigue.
Both parties experience mental anguish, feelings of disgust, low self-esteem, mood swings and anger. With that said, spinal cord injury statistics reports it’s one of the reasons divorce rates are higher.
Another reason is, sadly, the SO or spouse no longer sees their love sexually appealing. Knowing the person on the side of you could very well wake up in a puddle of their own feces, [loosened with urine], isn’t exactly a turn on.
Then, it’s the foul smell, too, which compounds the problem. It makes it difficult to want to cuddle with anyone in this condition. Situations like this make dating someone with a spinal cord injury challenging.
Mikki: What are some of the other ways life changes when dating someone with spinal cord injury?
Tony: Take, for example, a couple must start earlier to get ready for a doctor’s appointment.
Getting dressed and out the door now means a 3-5 hour evolution to wash, put clothes on, and perform the morning routine just to arrive 14 minutes and 59 seconds too late to see the doctor. If you think that second matters, think again.
Now, they must reschedule the appointment. It’ll be another few weeks before help is imminent and they get to do this again. The sad part is they need medicine now and missing the appointment will add more stress to an already stressful situation.
Mikki: I can imagine from time to time you’re like the bartender who hears everyone’s troubles. Are you equipped to handle any mental recovery at all?
Tony: We are not trained in mental health, but too often, we wear a life coach’s hat. Of course, we encourage our patients not to give up on themselves. We provide some comfort to the injured couple while they attempt to understand what the future holds.
One of the most common issues we deal with is “Why me?” We don’t have all the answers, and “Why me?” is a highly sensitive question to answer. We emphasize focusing on the future and not on why this happened. It is vital a patient deals with the now.
For someone who can’t facilitate this concept, they feel their body deteriorating. We aim to give hope to our patients. They know their presence with us is a step in the direction to change a permanent outcome.
Mikki: Why should patients and families hire you as their personal recovery specialist?
Tony: I strive to be among the best in the field. Some specialists come to work and go to the gym: I come to work, study more, go home to work on my Ph.D., plus find the time to workout.
I do this, plus look for ways to better my education and practice. My goal is to enhance recovery and to help my patients live a higher quality of life.
Mikki: Describe a typical week for anyone seeking your help? What makes the work you do significant?
Tony: My work takes into consideration the functions a person have and the functions they do not have; we work with both aspects towards a global aspect of each person’s recovery affecting their entire body.
A person seeking my help will likely do spinal cord injury research for cost-effective options to promote their recovery.The equipment is available in most cases and it’s cost effective.
They are expected to perform repetitious exercises to excite the central nervous system to respond and some exercises can be done at even the YMCA. I’ve had great success with most of my patients.
Patients are able to stand up for the first time since their injury. Some are even able to walk. They put in the work… it’s no picnic in the park when they accept me as their recovery specialist.
Mikki: What advice can you give a couple as a recovery specialist from a personal perspective as well as a professional one?
Tony: Take nothing for granted, being able to walk, roll over at night, scratch an itch, drive, live independently, etc. Because you can leave home one day and a driver can hit you and your life will never be the same. Some of us walk away from horrific accidents, while others don’t.
People really don’t know how good they have it until you don’t have it anymore. They don’t know what it’s like confined to a wheelchair or to experience the body’s internal organ systems creating complications, which inevitably can kill you.
Be aware of every small detail, which may cause a problem; be mindful of the statements made in regards to recovery. Always seek growth professionally; after all, the nervous system is the most complex system in the body and it doesn’t stop growing.
Mikki: You have a life chaning career. I bet it gives you a feeling of gratification at the end of the day. Anyone can see why you would love your job.
However, I’m sure you face many obstacles. What challenges are you looking to overcome as a recovery specialist?
Tony: The challenges are to break down the barriers of politically controlled regulations, limiting aid to people with disabilities.
To change the way the spinal cord injury is viewed in order to attain FULL government support and funding to help all those in needing recovery: keep in mind not everyone wants to walk again but to be healthy in their wheelchair to keep living life to the fullest.
Mikki: Of course, I have to agree – being healthy and happy are our two main goals in life and we certainly wish you much success in your career.
It was a pleasure to speak with you, Tony. I feel the public has gained insight into the life of someone with a spinal cord injury.
What Happens While Dating a Man in a Wheelchair
To read what it feels like to be dating someone with spinal cord injury, I’m sure, opened a few eyes. Continue reading, however, for a few more notes about paraplegic dating.
Avoid Negative Vibes When Dating Someone with Spinal Cord Injury
You’re going to have friends and family tell you to leave when you’re having problems adjusting because you’re not married, you’re only dating someone with spinal cord injury.
They will remind you of how young and pretty or handsome you are and you shouldn’t confine yourself to someone in a wheelchair. What you do is certainly a personal decision. Whether you leave or stay, it’s your decision and yours alone.
Unstable or Weak Financial Outlook
We all look for someone to take care of our needs when it comes to dating. While you’re dating someone with spinal cord injury, you’re agreeing to take on a task that involves great financial, mental and physical challenges.
Dating Someone with Spinal Cord Injury, Do You Sacrifice Intimacy?
When you love someone who is paralyzed, it’s natural to wonder if you both can still have the adult time or even children. In most cases, you can.
Try as much as you can to do things you used to do like kisses on the neck. This is the soft spot for many people; it should heat up parts of the body and raise heart beats.
Don’t be afraid to try new things to please each other. Some people retain the urges for activity and respond to touches. The experts prove sex is good for the body and the mind. In fact, there could be adverse reactions to not being active.
Just because you’re dating someone with spinal cord injury doesn’t mean you can’t still enjoy intimate moments. If you’re not seeing anyone but would like to, try a dating site for paraplegic singles.
Paraplegic Online Dating
Single paraplegics use paraplegic dating sites all the time. If you’re not dating but want to start, it wouldn’t hurt to check out dating sites even if you don’t sign up. You don’t have to be disabled to join or a specific race. Online dating can be fun and it could mean finding the perfect match.
Having this niche means less stress. Signing up for dating sites for someone who is paralyzed is easier for most people as it takes the pressure off them wondering if the other person will freak out because they are in a wheelchair.
Where to go for Help
You can try acupuncture for back pain, but for a spinal cord injury or paralysis, contact NextStep Atlanta Paralysis Recovery  546-5666. Their center, located in Alpharetta, Ga, is staffed with over a decade of combined experience and emerging cutting-edge certified Activity Based Trainers.
Don’t live in Atlanta? No worries. NextStep treats thousands of clients every year. Their state-of-the-art facilities are in 25 states. They not only treat clients but their significant others learn how to care for their loved ones. NextStep teaches, encourages and motivates through their recovery.
Life’s challenges are not supposed to paralyze you,
they’re supposed to help you discover who you are.
– Bernice Johnson Reagon