Relationship Questions I’ll Ask Now That I Live With A Chronic Illness

Posted on August 7, 2017 by MSAA

By Stacie Prada

Here’s the hard thing about relationships when you have a chronic illness. At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us. And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either. The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice. I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other.

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out.

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.” My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things.

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

Can you be gentle and respectful to me when my health inconveniences you?
Can you respect and appreciate me if it gets messy?
Do I like how you treat me when I’m sick or not doing well?
Do you continue to treat me as a partner when taking care of me?
Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
Are you there for me because you don’t want to be the bad person or because you want to be with me?
Will you go to doctor appointments with me and share my experience?
Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
How resilient are you? How do you handle stress?
Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Relationships are…

Posted on August 4, 2017 by Ro Washington

Dear No One,

Relationships are tough. I mean, I know I’m stating the absolute obvious to you when I say that, but just hear me out. We too often think of relationships in terms of just those we date or are romantically attached to. But relationships are more than that. We have relationships with our family members, our friends – hey even total strangers we strike up a conversation with on a train platform. And they all can be taxing and draining, hard to navigate and at times annoying. They can be stressful and expensive and not just in terms of money but in emotional investment and mental space. If I’m being honest, people can be the worst. I mean really, look around and you’ll find plenty of examples of reasons why we should not like people. Just look at what they do to each other and you aren’t immune if you know someone. People can hurt the people we know just as much if not more than the people we don’t. You see what I mean, relationships… they’re totally insane!

But then things happen like the other day when it was raining and I stopped at a light and I was annoyed by the day and by the rain and by just everything and I caught out of the passenger window a woman walk up to someone on a bus stop and offer for them to share their umbrella. Just out of the blue walked and stood near them and the person, startled by the sudden end to rain pouring onto their head looked up and then over and with a look of bewilderment cracked a nervous smile and tilted their head. And the woman smiled and the light turned green. Or when I went for a hike not far from my house yesterday evening and saw a dad picking his teary kid up off the unsteady hiking path. Just lift them up into his arms and as sure as the grass is green and the river moving told them that everything was going to be alright, they just took a little stumble. Things sometimes happen like the police officer who is called to a house to investigate a possible concern and ends up comforting a little boy who’s all alone or a teacher who has struggled to get a new student to be respectful and listen, gets an email from a foster mom saying thank you and that she’s seen a big difference at home even if there hasn’t been a big difference in class.

Relationships are tough. They’re messy and difficult. They’re taxing and at times confusing. They take a lot of energy and effort and thought. You spend time worrying if what you said was too much or too little, if you are being too intrusive or too standoffish. You rack your brain with what if they don’t understand or don’t laugh or don’t come back. And all of those are possibilities that we face and can leave little pieces of us chipped off. But being in relationships also make us richer, fuller and more colorful. They make us smile and laugh and become more caring. They make us understand and see things differently and open up. They’re tough, don’t get me wrong, but they’re also worth it. They’re worth saying Hi to the person you meet at the airport and worth smiling and asking how they are doing of the cashier at the grocery store. They’re worth reaching out to people we’ve been thinking about and worth letting those in who we’d otherwise keep at arms length. They’re worth replying to the community post someone started about feeling alone and worth getting into even if it doesn’t end the way you’d hoped. Relationships are worth it and I guess since they are…maybe people aren’t so bad after all.

Affectionately,

August 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on August 2, 2017 by John MSAA

MSAA is very proud to present our 2017-18 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Rhena Hall – Little Rock, AR
Summer Sunshine Rose

About the Artist:
“I was diagnosed with multiple sclerosis in December 1981.

I have been struggling with dizziness and complete exhaustion for an hour, then I recover for maybe 30 minutes then tiredness starts in again. This is a lifelong struggle and I will not accept defeat. Medicine is now making my goal possible. Had to retire at 37 years and have been in a wheelchair briefly, crutches, now cane. Exercise daily…classic stretch. Too busy to give in to MS.”
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