When faced with a loved one or friend who has a diagnosis that comes with no cure... yet. It’s hard to know what to say and the desire is to be supportive. Sometimes that “support” can do more harm than good. It’s all in perspective and sometimes just by changing a word or two you can in fact make a larger positive impact, and provide the support you intend.
The number one mistake we all, including myself, tend to make is trying to “fix” the problem. People facing horrible realities and attempting to come to acceptance that there is no plan to fix them, there is no cure, and what time they have will become worse with age. We all want to cure and heal, but we can’t. We can’t look at someone in deep struggle and say “keep your chin up” or “your strong, you got this.” In reality those kindly meant words only prove to make one feel guilty for not being able to live up to the healthy person’s expectations.
We want a plan of attack, medications, or treatments that can cure us or stop what is destroying our bodies. The thing is that sometimes the answer is no. There is no answer or plan to be had, and that is shitty. Life can be shitty and it’s better if you help us live with that reality than sugarcoat a false sense of hope.
Don’t get me wrong, there is always hope for a cure or treatment to lessen the illnesses that plague. So many who hope for future discoveries with an understanding that most will never face a present day illness with no modern cures or treatments available. It’s not a death sentence for some, and for others it is a slow crawl toward that inevitable end that comes for us all. People with illnesses feel those moments more profoundly and at times viscerally, so if we react a bit over the top, understand that it’s coming from a very real state of mind.
It’s okay to say “that stinks” or “I’m sorry.” It’s okay to validate how we feel and sit with us in that moment. Know that your presence and desire to simply hold space for us can make all the difference in how we deal with our illnesses. When you feel the hope of others around you with real recognition of reality, you feel empowered. It creates a bond between you and the sick that wasn't there before. The simple recognition and being an ear is sometimes what it takes to calm the mind and move forward with the day. When life is overwhelming a friend that takes you by the hand without judgment, it can and does make a life and death difference.
How we age with our illnesses depends on who we surround ourselves with, in part. If those around you tend to be the Nasty Nellie, then they will bring you down. That dark space in our minds that those who are ill face daily can be hard to not climb headfirst into. Your emotions are so wrapped around you that you feel as if you could suffocate in your own pain. Pain is blinding; both physical and mental pain can and does take lives. Don’t just hear, but listen. Listen for the moments when hopelessness may be sneaking in. Remember that we will face this over and over again as we progress. It’s not a one time deal, and then go on. We are constantly reminded by our bodies, even when our faces may be putting on a smile; don’t let us fool you. You have nothing to lose. Best case, your loved one knows you care. Worst case, you may be the one to see the warning signs and get help for someone who maybe is thinking about hurting themselves.
We live in a word that tells people that if you can’t afford healthcare, you don’t deserve to have access. Nothing you have done in your life changes that in some people’s minds. They see healthcare as a luxury, like a car or house. I don’t, and having worked in healthcare for 20 years, I can tell you that I have never met a provider who didn’t believe in providing good care without having a clue if the person had insurance or not, money or not; they wouldn’t be left to die or suffer.
Now we live in a world that is telling people just that, that their suffering is their own fault and no matter what brought them to a point of not being able to afford healthcare, there are no excuses. Some go so far as to say it is the natural order of things, but even animals will care for the sick ones in their packs. Lions will walk with the weakest of them, protected from the front and rear by the strongest among them. Yet human beings will walk right by someone in horribly deep pain and suffering, all the while saying, “You should have planned better.”
All the planning in the world will not save you in a catastrophic event, and if you believe it cannot happen to you, you’re kidding yourself. This is the reality that those who are sick live in. Now some are forced to beg for access to medications or treatments, others go without and suffer unable to care for themselves until or unless someone turns them into the state, for them to be put into a home and then be given the care they needed, but having lost everything that gave them their identity in life.
Instead of pointing out what doesn’t work, help them find what does. Maybe a trip for clothing that fits better, and be honest about what looks nice or not; we really do ask your opinion to have a real answer. Telling us what you think we want to hear really doesn’t make us feel better. We love that honesty, and we want to laugh or even argue over our point of view. Good conversation makes us feel alive, it stimulates the mind and helps us have a natural smile. We don’t want to just nod our heads in agreement in your discomfort. Let us lead the way and just ask what you can do, or if we would like a chance to talk. Be honest about what you don’t know and what you wish for. We want to hear your dreams too.
Tell us about your future plans; don’t avoid the subject out of fear of upsetting us or making us feel our own mortality. It’s okay to share and allow us to share in your joys and your sorrows. Avoiding the topic of death doesn’t make it go away, it simply shuts us down to not be able to say and do the things we hope to accomplish. We are not dead now, remember that, and instead of worrying about us being hurt, let us make the choice. Don’t say no because you fear an injury we can not go through; we will get bumps and bruises like you. Our maybe different but living life is still better than looking at it through a looking glass. Too often we will be skipped over because we use adaptive equipment, like a walker or wheelchair. We know to see if what the plan is will be accessible to us.
It’s never our intention to show up somewhere uninvited; it’s okay to invite us to things that you know we most likely will not be able to come to; being thought of or included means a lot more to us than it has before. Now being including is being accepted as we are, with all our failings and difficulties. It lets us know that our life still matters to others and that we can still make positive footprints in this world.
We may be be damaged or broken in some way, but we want so much to be a good friend to you, and to grow old with you. Remember that here and now is what matters. Not money or things, not really. It’s the memories we make, and the pictures we store in our minds that bring us the most joy.
By Jenny Coffey
Former New Hampshire State Legislator and Activist