Supportive Partner to a SCD Patient
Is your partner living with sickle cell disease and you are
still trying to figure out how to be a fully supportive partner? This important
topic is rarely covered, though lots of people want to learn how to care for their
partners with SCD. Support, help or guidance when necessary for any SCD patient
is more than important physically and mentally.
Educate
yourself on SCD
Learn to be proactive when it comes to taking care of your
partner especially if he/she is a SCD patient. Loving your partner well begins
with learning enough about him/her. In this case, it requires putting in some
work on sickle cell disease education. Educate yourself using resources such as
the internet (suzzymuketips blog) and social media platforms, Instagram and YouTube
as well as local and national organizations.
Whether you’re in the UK, USA, Australia, Canada like me, or
in an African country, you can link to sickle cell charities and if they are
not there, try talking to doctors for more information about treatments, DOs
and DON’Ts, handling pain crisis and more. You would be off to a great start if
you do the above.
Cultivate
good communication skills
Not everyone living with SCD gets the same effects overtime.
So, don’t expect your partner’s condition to be the same as that of someone you
might know. Understanding the science of the condition and focusing on good
communication helps to keep your partner feeling supportive, cared for, helped
and loved. Also note that a Google search is not enough to explain how sickle
cell affects your sweet heart. So, implement and communicate what you’ve
learned smartly and let your partner share his/her history, pain, experiences
and feelings with you. Build an environment of transparency in your
relationship. This enables the patient in your life to feel free to open up
about how sickle cell is affecting them and what they can do or not do at any given
moment.
Become a
responsible advocate
Be there for your darling and advocate for their health in
every positive way possible. You can do so by trying to understand their
condition, medication regime, treatment plans, and medical appointment. What a
supportive better-half you would be if you care for your partner with SCD this
way!
To be a responsible advocate, endeavour to have useful
discussions to make you familiar with the patient’s treatment preferences. With
that, you can advocate for them as an informed partner anytime they’re
incapacitated or need help.
Remember that a lot of hospital treatment for crises depends
on strong opioids that can knock a SCD patient out. This means a patient may
hardly always be in their right frame of mind to advocate for themselves. My
husband is always there to assist me when need be.
Encourage
flexibility
Remember that sickle cell patients often experience fatigue.
So, you and your partner should be proactive by building flexibility into your
daily plans. Such should be plans with room for changes even at the last
minute. Please avoid making the sickle cell patient in your life feel guilty in
case they are obliged to cancel or postpone plans. Moreover, make alternative
plans at home that involve adequate rest.
Let me point out that this list is not exhaustive as there
are other ways you can explore to support the sickle cell patient in your life.
In addition to the ideas we have discussed above, please discuss with your
partner/patient in your life to understand what he/she wants and needs.
Are you supporting a partner with sickle cell disease? Share
your experience with us below briefly or k
question.
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