{"id":315,"date":"2014-03-09T19:08:43","date_gmt":"2014-03-10T02:08:43","guid":{"rendered":"http:\/\/debbiepetrina.authorsxpress.com\/?p=315"},"modified":"2022-06-13T13:19:43","modified_gmt":"2022-06-13T13:19:43","slug":"ms-and-your-relationships","status":"publish","type":"post","link":"https:\/\/debbiepetrina.com\/?p=315","title":{"rendered":"MS and Your Relationships"},"content":{"rendered":"

\"\"\u201cStrategies & Tips\u201d<\/strong><\/p>\n

On February 15th, I facilitated a workshop entitled \u201cMS and Your Relationships\u201d in Phoenix. The workshop was part of Genzyme\u2019s One Day for Every Day<\/em> Event. This is a summary of that workshop, as I want to share this information with a larger audience.<\/p>\n

I began by telling the attendees that a one-hour timeframe was not enough for this big, important subject. It\u2019s bad enough that everything about MS is complex, from the diagnosis to the symptoms; after all, the nervous system is involved. But people are highly complex too because of their thoughts and emotions. So when you put the two subjects together\u2014yikes!!<\/p>\n

Just about everyone in the room with MS was there with someone else\u2014either a spouse, sibling or friend. This was good because everyone living with the MSer is also living with MS. And that goes beyond the immediate family.<\/p>\n

My presentation was to discuss communication strategies and tips to create a foundation of open and honest communication. I adjusted this goal to first, make the group interactive, and second, address two other critical aspects of relationships: support and knowledge.<\/p>\n

\u2022 Support and knowledge reduce the fear one has with an MS diagnosis. The more you have of both, the better chance you have to survive this disease. One has to be careful though where one gets the knowledge since because of social media, there is much information available today that can be overwhelming and inaccurate.<\/p>\n

\u2022 Since MS is still a lifetime illness, knowledge and support will change many times as time marches on due to disease progression and lifetime changes that will occur.<\/p>\n

\u2022 Everyone in the room needs it; everyone outside the room needs it. What is NOT a strategy? Doing nothing\u2014doing no communicating, obtaining no knowledge, getting no support. Anyone dealing with MS will not survive it if none of these are done.<\/p>\n

Who are the relationships the person with MS interacts with? What do we say to whom? Who do need support from?<\/p>\n

\u2022 Family: partners, children, parents, siblings (Needs communication at appropriate level; \u201cshow & tell\u201d is a great game to play to help a non-MSer understand invisible symptoms. For example, have men walk in spike heels to understand balance issues; put 10-lb, weights around ankles to experience walking heaviness and fatigue; put a knit glove on a person and have them find objects in a purse like tissue, quarters, etc.)<\/p>\n

\u2022 Friends (How much you share depends on depth\/closeness of friends.)<\/p>\n

\u2022 Workplace people: boss, colleagues, human resources (very subjective area\u2014many\u00a0reasons to disclose or not to disclose)<\/p>\n

What groups were missing from the power point slide in the presentation that are just as important?<\/p>\n

\u2022 Peers (They are a lifeline for both MSers and non-MSers\u2014someone you can easily relate to because they are \u201cin your shoes.\u201d)<\/p>\n

\u2022 Healthcare team (Make sure all of them understand and have experience with persons with MS!<\/em>\u00a0 For example, a physical therapist needs to understand the effects of heat and fatigue of MS. Also, you need to like and trust your neurologist; if you don\u2019t, fire him\/her and get another one, as this is a lifetime, crucial relationship.)<\/p>\n

\u2022 Strangers (I have had to ask strangers for help many times since I had mobility problems since my early years. For example, helping me reach something in a grocery store, or assisting me in a dressing room. People in general–in all of the above groups too–like<\/em> and want<\/em> to help. It makes them feel good, and they hate to see someone struggle. Personally, I will let people help even if I don\u2019t necessarily need it!)<\/p>\n

\u2022 Pets (Wow\u2014they understand\/comfort us the most, don\u2019t they?!)<\/p>\n

I had all eyes on me from my audience, and many nods or claps. It was interesting to see hands go up when I asked how many felt they needed better support in various groups or who didn\u2019t like their neurologist.<\/p>\n

Talk is good, even if it doesn\u2019t solve anything. It feels good to get things off our chest. I have an old MS buddy who called me recently and asked, \u201cCan you talk to me? Is this a good time?\u201d But if there is someone like a stranger or a fellow employee who asks you something that you don\u2019t want to talk about, just simply say: \u201cIt\u2019s a long story\u2026\u201d<\/p>\n

Venting is also good, as long as it doesn\u2019t hurt anyone. For example, when I get stressed out or frustrated, I cry or call a close friend of mine who is a peer. My husband on the other hand will yell or throw things in an un-harmful way. We go our separate ways to vent because I don\u2019t like his yelling, and he doesn\u2019t like my crying. When the steam is released from the pressure cooker, everything calms down. Holding things inside without a release is dangerously stressful, and we all know how stress negatively affects MS.<\/p>\n

What if the people we need to talk with will not communicate or talk? Then it is essential to find someone who will\u2026<\/p>\n

In the beginning of my MS, my family was in denial. I went straight to the local chapter of the National MS Society to get literature and meet others who had MS. Later, when both my husband and my mother wouldn\u2019t talk to me about my MS, I went to a therapist who understood<\/em> MS to help myself deal with these two close people in my life. Years later, I went to a therapist again when deciding whether to give up my career. My MS was aggressive and it was progressing rapidly.<\/p>\n

There\u2019s no question that people living with a person with a chronic illness such as MS, is also living with it too. While open communication is essential for all involved, it unfortunately doesn\u2019t always happen effectively without having an \u201coutside\u201d person\/s involved. Perceptions are different, emotions are involved, and more often than not, negative consequences result. Ideally, partner\/family counseling is essential in most cases.<\/p>\n

Realistically, there are obstacles with professional counseling. The first is that many people–whether they have the illness or not–do not want to go to counseling. This was the case in my own personal situation and though I pleaded with my family to go, it didn\u2019t happen. So I went to counseling on my own and fortunately, it helped me tremendously to figure out how to handle my family relationships and how and where I could get support that I needed. Secondly, I believe it is imperative that a good, reputable therapist who UNDERSTANDS MS is found. MS is complicated in many ways, is generally progressive, and currently lasts a lifetime. Finally, many people unfortunately cannot afford therapy; however, many county health departments have resources available for financially strapped people.<\/p>\n

So what are strategies to foster healthy communication?<\/p>\n

\u2022 Should you always be honest about your feelings? When I asked everyone in the room if they were ever dis<\/em>honest about their feelings, every single hand went up! It obviously is a judgment call, depending upon the people involved, and their personalities. With your healthcare team, you need to be honest. With everyone else, the group agreed that you can\u2019t be a constant complainer or whiner. Be selective with whom you are comfortable with and trust to discuss your concerns, problems, fears, etc.<\/p>\n

\u2022 Keep a journal about important things that need to be communicated, whether it is info to discuss with your doctor, modifications that need to be made at work, or just notes about what you want to talk about.<\/p>\n

\u2022 Pick an appropriate time and place for a discussion. Trying to talk when one is tired, hungry, or stressed out will be a disaster. Try to be in a relaxed frame of mind, when interruptions will not occur.<\/p>\n

\u2022 Be respectful of what the other person is saying\u2014this is a two-way conversation. Actively listen to each other, and avoid accusations, finger pointing, name calling, yelling, etc. How<\/em> and what<\/em> we say matters, as well as the tone that we use. Avoid negativity.<\/p>\n

\u2022 Two-thirds of communication occurs through body language. Your posture, facial expressions, eye contact, etc. speaks volumes. When someone rolls their eyes or points a finger at you, what does that indicate?<\/p>\n

\u2022 Ask for<\/em> help and ask to<\/em> help. People want to help, and people need help. Be explicit or give examples when talking about this to help clarify your statements. Ask questions and share perspectives. Try to put yourself in the other person\u2019s shoes. And remember\u2014none of us are mind readers. Not only are you communicating here, you are educating<\/em>.<\/p>\n

\u2022 Everyone should show and express their gratitude often. Give complements.<\/p>\n

\u2022 A hug, kiss or smile goes a long way.<\/p>\n

\u2022 From experience, I believe that we MSers set the tone and comfort level. If we are relaxed and open, the other person will be too.<\/p>\n

\u2022 My personal advice to all: show and give empathy<\/em>, not sympathy<\/em>.<\/p>\n

\u2022 Use humor when appropriate. Many times, the subject being discussed can be very sensitive and not funny at all. Or, it is hard to be humorous when you are not feeling well.<\/p>\n

\u2022 Avoid arguing and be patient. If an argument develops or patience is lost, quit the discussion and regroup later.<\/p>\n

\u2022 Always try. If it doesn\u2019t work, try something else.<\/p>\n

Well we ran over our one-hour timeframe, which was no surprise. But it was a start, and I always say that \u201cGetting started with anything is the hard part.\u201d Now everyone has a framework or some ground rules they can try to use to enhance their communication, support and knowledge.<\/p>\n

At the conclusion, I gave everyone a copy of a previous blog that I had written entitled \u201cMSers and Their Loved Ones.\u201d<\/a><\/p>\n

www.DebbieMS.com<\/a>
\nAuthor, MS Counselor\/Living with MS<\/span><\/span><\/p>\n

Please visit my website for more articles, videos, my book, MS information and resources.<\/p>\n

 <\/p>\n

\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

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