We frequently receive emails, have discussions with individuals, read online sources and hear from organizations requests from individuals wanting to meet others living with lupus. Specific factors like shared occupations, hobbies and interests, neighborhoods, support during symptoms and treatments, gender, marital and family status, or to simply meet others who share their perspectives and choices in what living with lupus means to them.
The P.O.R.T program is designed to assist individuals living with lupus in creating supportive networks matching their needs and situations with other P.O.R.T participants we call Crewmembers.
Let’s begin with what the P.O.R.T program is not:
It is not a monthly support group.
Support groups are often recommended to patients as a means to assist in the adjustments and challenges facing life with illness. There are professionally-led and peer-led groups available for those individuals who are initially seeking emotional support, information from speakers and opportunities to share their experiences with others. MLWT recognizes, however, that groups aren’t for everyone and this leaves a number of people missing important lupus support resources.
It is not an alternative to medical and/or therapeutic care.
It is a peer-focused network to share ideas, social opportunities, discussions and learning opportunities with others in the same ‘boat’, in general. An important thing to remember is that, no matter where we seek support in managing our health and strengthening our wellness, our primary source of health information and treatment lies with our professional medical teams. Lupus is an illness that presents itself in a multitude of ways. No one can have nor understand the complexities of the illness from one day to the next. Any changes or crises that occur in a P.O.R.T participant’s health must immediately be directed to their physicians (this point is outlined in the agreement signed by every new crewmember.)
These are two major concerns among patients, medical and wellness professionals alike, when it comes to finding support resources that directly influence health and emotional needs. MLWT recognizes how difficult the changes and challenges stemming from lupus can be for patients and their families.
The amount of information shared by and between crewmembers will depend on each individual’s level of involvement. Similarly, the frequency of contact and goals for participation will be based on each person’s reasons for joining.
Each P.O.R.T crewmember agrees to commit to basic guidelines regarding confidentiality and restrictions in offering medical advice. The purpose of this network is to build up our social support networks that include individuals who are there for the lupus issues when we need them. This may not be the case every day and other individuals in our support networks may be sufficient most of the time. However, for those times and situations when we must address our health issues, this program offers a convenient and personalized resource.
So, here is what the P.O.R.T program is:
It is a personalized and private wellness resource.
P.O.R.T provides crewmembers opportunities to explore their particular support needs based on their individual health goals and wellness action plans. Both peer-led support groups and online social networks provide supportive options in learning about others’ health experiences and finding emotional comfort in knowing we aren’t alone. However, these are still very public options that may still be too vague, unregulated and too illness-focused for some of us. This network offers the flexibility to personally choose who we want to team up with while creating our individual lupus wellness plans. MLWT is creating a database of names and general information of individuals living with lupus and lupus-related illnesses within Oregon and SW Washington who are interested in meeting others based on particular support needs.
For example, if you are looking for an exercise buddy who also has lupus and will understand particular restrictions in activities, needs for R & R or can offer supportive encouragement that positively motivates without the judgments, you would register by adding that information to your crewmember search. When someone is looking for someone to work on exercise target goals, your name will be listed and considered in the matching process.
It is an immediate community of crewmates for the MLWT Target Practice Workshops.
Individuals participating in the P.O.R.T program are invited to small Target Practice get-togethers, offering opportunities to discuss specific issues with a community of like-minded individuals who share common experiences. These gatherings are similar to the social networking meet and greets offered through Twitter and Meetup.com. The difference between these type of social gatherings and the MLWT Target Practice get-togethers, however, is the assurance in who attends, a designated purpose or goal of the event and in knowing that there is already a shared agreement honoring the privacy and confidentiality of each person attending.
If you would like to register for the P.O.R.T program, simply register on the website in the right-side column. You will receive a follow-up email and a chance to talk more about your level of participation, what you’re looking for from the community regarding topics, the general area that you live in and your approximate age range. Any more details can be added by you to help narrow down the match. If you would like to receive additional information about this program, simply contact Maria at maria@mylifeworkstoday.com.
