On one hand, living with a disability or chronic illness creates so many barriers; nearly all of these vary or are contingent on a plethora of routes and lives lived up to this moment/up to the onset of disability.
On the other hand, supporting someone with a wide variety of needs, such as someone in a wheelchair, or a loved one who is meeting the passage of time – that’s no walk in the park either.
It is difficult to be the helper. It is also challenging to be the one who needs help. At some point, we all will be fortunate enough to understand both perspectives and their respective realities.
If we are in this dynamic, we might find ourselves feeling guilty for what we can or cannot offer the other, both may feel inadequate or undeserving of the other at times, and because it feels as though we are on opposite sides of the fence more often than not, this can also mean we are prone to forgetting what a sacred relationship we’ve been given.
In my life, out of all of the other relationships I have witnessed or been part of, there is no greater relationship in which two people are more able to give and receive love than that of the caregiver and the loved one to whom care is given.
I have been fortunate enough to see both sides of the “helper/helpee” coin. I’ve needed help, and I’ve been there to help others as well.
One thing that I see most often from people who have Cerebral Palsy, a Traumatic brain injury, or another illness is their struggle with allowing themselves to receive the assistance they deserve.
For some, it may be a matter of pride, modesty, or sheer self-reliance; for others, and I suspect for all of us who have had to look to others for support, and in harsher circumstances, survival, the issue is a matter of much more than surface-level traits. With this in mind, I’d like to express my perspectives on what it felt like to be in each place drawing from my own, perhaps limited, but no less truthful experiences.
To the beloved well-meaning caregivers:
You’re doing the best you can with the tools you’ve been given. These resources are often limited and scarce, and it is you, the advocate, nurturer, and lover who often bears the brunt of your family member’s/patient’s/client’s frustration. I see you. I personally thank you. You are doing God’s work.
If I may, I’d like to remind you that the resistance to your help isn’t out of stubbornness or a desire to be contrary: Resistance is often just a big word for fear. Fear of being of too much, fear of being seen as more of a taker than a giver, fear of facing the prison we sometimes find when seeing our atrophied legs or degenerating muscles, or our declining mental health.
We know we’re difficult to be around. We know you’re tired. We feel that. We know we’ve been in eleventy-seven different moods by the time night falls. We know, no matter how much your good heart denies it, that sometimes we ARE the reason you’re burnt out.
We want you, our caregiver, to know its okay to be tired, and yes, we know you’ll never admit to this because you dont want to hurt our feelings or cause us to feel as though we’re a chore to be dealt with.
Sometimes that makes us, the loved one you’re taking care of, sad. Not because you’re doing something wrong or because we are ungrateful, but because we want your life to mean more.
We don’t want to be the reason you’re held back. We love the quality of your care and of the neverending reach of your love; so much so, that we would also love to share the gift of you in your entirety with some other well-deserving people too!
We often feel as though you’re chained to us by unfortunate circumstances, and we forget that you’ve chosen to care for us because you love us. Sometimes we need to be reminded that you’re here by choice, not because you got stuck with us. Remind us that we didn’t get any less cooler just because we need you more than before.
I’m willing to bet we both forget why God placed you with us: because you have more than just the capacity to love us best. You’re also really good at it, even when you think you’re falling short.
You know just how we like our coffee, pancakes, and sometimes you have to put us to bed or remind us to eat, take our medicine, or tie our shoelaces. You manage to do these things without making us feel worse about the fact that you’re probably the only one who cares enough to do these things.
Let’s not forget your remarkable and convincing arguments on why we’re not the burden we see ourselves as: It is a core belief system you’re working with when helping someone who is disabled in some way.
Speaking from the perspective of someone who is disabled but also works as a volunteer crisis counselor: There’s so much pain involved in asking for help than one might realize. In a sense, it is similar to a collapse of self.
Asking for help is more than just succumbing to percieved weaknesses or afflictions. Oftentimes, grabbing the hand of someone who reaches out to assist you says a great deal not only about one’s level of trust in the person, but of their trust in the world as well.
If I grabbed onto someone else’s lifeboat before I found yours, and the last person tried to drown me under the guise of saving me, I’m going to think twice about accepting your help, even if you’re trying desperately to drag me to shore. Re-establishing trust/building rapport/showing me your intentions is important.
Asking for help is revealing to you that I am a vulnerable human being. It is giving someone access to a wound we would really not like to be shamed for.
There’s a reason no one likes unsolicited advice and hovering, though the intent is to help. Sometimes it communicates that a person may not have enough faith in the bond that is shared, or in the abilities of the person you’re advising. After all, if you’ve told me I can come to you, will you keep giving me advice, or would it be better to let me explain to you what my needs are, and then you help? How can you help if you don’t know what my needs are? Jumping in to help can tell the person that you doubt their abilities; ultimately, you don’t trust them. They will respond in kind, even if you’re intent was the opposite.
Asking for help is an art, just as much as giving it is. Trust that the person you are caring for will come to you after you’ve built a bond, and they will come to you; otherwise, it can come across as nagging, harassment, a sales-pitch or manipulation.
See? All of that is required before someone can comfortably depend on you, especially if they’re disabled and need to keep boundaries in place more so than another.
TLDR, if we bite back, we’re scared. It’s not that we don’t love you, it’s probably just that we’ve forgotten that you love us.